Tag Archives: Caregiving

Courage at Twilight: Someone Else to Push the Chair

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Jeanette has come, and I have left her with the work and fled to my upstairs office to read Brian Doyle’s humorous penetrating moving essays, and have escaped to the yards to trim low shrub runners and pluck crab grass and spray the arborvitae with putrescent eggs spiced with clove oil that mule deer despise, and I beg off from the evening walk to the end of the street and back, my feet aching from a bloody self-pedicure and the day’s hike, content that someone else has come to push the wheelchair. I want to heave at the odor of commercialized rot—I am desperate to deter the deer—and decide to follow a neighbor’s suggestion to cut in half bars of Irish Spring soap, drill a hole in each half, and drape a green perfumed necklace to each faltering arborvitae tree.  Nearly half of the trees’ greenery was eaten by deer, and nearly the other half froze and dried and sluffed away, but new green, darker than the soap, richer, is peaking out from what I thought were dead twig ends.  A new day, and Sarah has come, and she has rousted Dad from his reading lethargy to come watch the cousins play cards and to coax the cousins out the front door and down the homemade ramps, and Jeanette and Sarah have struck off to the end of the street, Amy aahing at divinely gorgeous flowers.  I had followed, too, and waived at Greg, the thirty-three-year veteran retired police officer whose garage walls are speckled with five thousand police agency shoulder patches from all over the U.S. and the world, though he used to have six thousand patches and has sold one-thousand on e-Bay to self-fund a missing dental plan.  I shoved off and caught up, and we ended the walk in the back yard on Memorial Day and encouraged Mom and Dad to tell stories of their long lives.  Dad’s first memory of his mother came when he shut his finger in the screen door and sprouted tears and a purple blood blister, and Dora cooed and chortled over him and kissed his finger and comforted and promised he would be okay, and Dad decided at that moment in his life that he would be okay.  Dad’s first memory of his father came from working outside in the yard, where Owen had a bucket of dirty transmission oil, and where Owen and Owen Jr., the latter only three, each dipped a paint brush in the black oil and slathered it darkly onto the thirsty sun-bleached wood-fence slats, an inexpensive waterproofing stain.  Dad’s first memory of Mom was of the church dance when he was 25 and she was 21 and they met and he asked her for her phone number and she willingly gave him her number, and over the coming months he gazed at her often and thought how kind and smart and beautiful she was, and how nice it would be to live a long life together.  They have moved inside for ice cream, and I have watered my pumpkin-seed mounds, waiting for sprouts to emerge, upon which I will shave flakes of green soap against the deer.

Yours Truly with sweet sisters Jeanette and Sarah.

Courage at Twilight: With a Vehemence

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“Welcome home!” Mom cheered with a bright smile and her arms raised high. “Welcome Home, Raj!” Dad echoed.  (“Rog” looks sensical but rhymes with “Frog.”)  The day was just another of 400 days I have come home to Sandy from work 55 miles away in Tooele.  Yet Mom and Dad made me feel like the son newly home victorious from the front lines of life.  Slurping our Lazy Rigatoni with sausage and sauce, I told them about volunteering that day at the free NoMas immigration clinic (No More a Stranger), and how I wished the facts for my asylum application were stronger, but that stronger facts would include kidnappings or beatings or murders, and how returning the man and his family to Maduro’s Venezuela likely would mean kidnappings and beatings and murders, and about how well I performed my work might mean escape, and if not escape, returning the man and his family to….  That morning, the shower pipe had again slipped into vibrating screams, which I loathe with rending vehemence, screaming in my soap-slimed face: “You’re doing it wrong! You’ll never be good enough!” and I had again adjusted the water quickly to quiet the unbearable banshee.  And that evening, after dinner, Mom handed me a note Dad had written to Tamara, and asked if could deliver it, but after a twelve-hour work day I did not want to find the emotional energy needed to deliver a note to a woman dying of pancreatic cancer, feeling awkward with what to say, but I said simply, “My Dad wrote you a note: he loves you and hopes for you, we all do.”  Tears and smiles: they arrive with our suffering and hope.  We do hope for her.  This is our faith, that in healing or in dying she finds hope and finds love.  Pine needles had fallen thick over the years, an unruly mat in the back yard, and I quickly filled both cans, pensive about Tamara, waiting for next week to fill the cans again.  With his bowl of chocolate ice cream and a slice of warm chocolate-chip pecan banana bread, Dad complained that he could not sleep the night before, how his hips and legs had hurt, how he sat on the edge of the bed in darkness wondering whether years of sleeping in the same spot on the same side of the same mattress might suggest turning the mattress over.  In the day’s eleventh hour, I hurriedly stripped the bed, flipped the queen mattress over, and strapped on fresh sheets.  Rising slowly in the stair lift, still they caught me in the last tuckings.  “Which way did you flip it?” Dad asked.  “I flipped it,” I answered.  I hope he sleeps better.  We shall see.

Courage at Twilight: Reminiscing with Mr. Towhee

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The Spotted Towhee pecked at seeds on the ground and flitted from tree to rock to limb.  I watched him for a full 20 minutes, and decided he was such an adorable little creature.  I think he has taken up residence in the tangle of arctic willow trunks.  Watching the pretty bird in the cool evening breeze, I reflected on many things.  On how Dr. Seegmiller has decided to care for his invalid patients by making home visits, kneeling at recliners to clip nails and shave callouses.  On how the new Church missionary from our neighborhood, off to Argentina for 18 months, had discounted her “simple faith” because it was not more sophisticated or profound, not realizing, yet, that simple faith is pure and powerful faith: genuine.  On how Dad observed one evening, “Rog, if you got married now, we would be in a rest home” and I thought he might be right, and I determined to continue my mission to minister to my parents in their days of feebleness and need.  On how I gave an ethics presentation to the city’s Public Works Department (water, sewer, and roads divisions), a tough crowd in boots and ball caps and dirty jeans, and how I coaxed them to laugh and to think, and how Mom and Dad insisted I show them my PowerPoint slides in an abbreviated show, and how we learn ethics through living, and promise to do better next time.  On how I took Mom and Dad for a roll, pushing Mom’s wheelchair, past the guard shack and gate, into wealth and privilege, all the Porsches and Audis and Lincolns and BMWs racing by, and how they are not representative of most of America, or of me, and how I joked with Dad that he would be pulled over if he didn’t stop riding off the edge of the asphalt trail.  And on how Steven had remarked that for all Dad’s disappointment and misery, and despite two minutes of agony every two hours (when nature calls), he is happy in his life, reading his books (several a week), scanning the New York Times (daily), watching television (totally at Mom’s mercy since he cannot operate the remote), enjoying tasty nutritious food (yesterday French sauteed chicken in onion cream sauce), visiting with visitors (from church, mostly), balancing his checkbook (check register in one hand, pencil in the other, calculator on his lap), doting on grandchildren and great-grandchildren (I have lost count), and chatting with his white-haired sweetheart (of 62 years).  And Mr. Towhee hopped and flew all the while.

Above: French sauteed chick in onion cream sauce, roasted tarragon asparagus, and scalloped potatoes from a box.

Below: The melted jumper cables from my failed attempt to jump start Mom’s dead car battery.

Courage at Twilight: Booby-Trapped

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In the three weeks since Steven and I planted the four emerald green arborvitae, I have watched them disintegrate before my eyes, each day more pieces of green leaf littering the ground. I emailed the nursery pleading for help to keep them alive—we had worked too hard and brotherly to let them die—and the nursery’s diagnostician replied that the trees looked alive but badly eaten, and he wondered if we had deer in the neighborhood.  Boy do we, I fumed to myself for the thousandth time.  Mule deer roam the neighborhood by the dozen, nipping at tulip sprouts and lily petals and other flowers and shrubs and garden produce, transforming from wild novelty to neighborhood bane—but I had not thought they would eat evergreens full of resins.  I drove to Lowes immediately and purchased two deer repellent products, the first a powder of dried blood (the package did not say whose) that would trigger the instinctual flight response in deer (so the package promised), and the second a liquid concoction of putrescent egg solids graced with garlic.  Eager for the trees to begin their recovery, I sprayed them liberally with putrescence, and discovered instantly why deer and rabbits—indeed any sane creature—would stay away.  Then I spent an hour manicuring the tree moats and surrounding grounds, skunked and gagging the while.  I would have done well to reverse the order of things.  But by the time I had finished, the revolting stench had become strangely comforting: if it worked, our trees would recover and fill out, emerald green and evergreen fragrant (except for the days of repeated treatments).  After my report to Dad, he explained how he has had increasing trouble rising from his shower chair after bathing.  He thought he must be getting fatter because the arms of the chair hugged his hips tighter and tighter.  Today he could not free himself of the chair, but stood with the chair clinging to his backside like in The Bishop’s Wife.  Surely, he thought, he could not have gained that much weight in just a few days.  He asked Elie to take a look at the chair.  After turning the chair over, Elie announced that the chair’s metal supports had cracked, allowing the chair to bend and the arms to squeeze, and that if Mom and Dad kept using the chair it would soon snap in half and collapse beneath them.  Sarah lost no time sending over a newer, stronger chair, a pleasant blue color.  I have contemplated many times, in fact constantly, the value of the help and service my siblings have gifted to our parents, and how the gifts are in turn mine, lessening the weight of burdens, making room for a break, unstringing the bow.  And I am grateful.  After dinner Dad declared, “Roger, it is so nice of you to get home late from work and make us a dinner of roasted vegetables.”  The sweet potato and butternut squash wedges, roasted in olive oil and salt, had indeed been delicious.  But the odor of putrescent garlicky eggs remains arrogantly in my nostrils.

Courage at Twilight: By Some Fluke

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By some fluke of chaotic coincidence, light from the morning sun barely peaking over the Wasatch ridgelines glinted off the reflecting white octagonal Stop sign tape and flashed at an acute angle through the open blinds of my bedroom window and projected onto my closet doors shifting prismatic flickers, quite beautiful and striking, creating one of those moments when ask myself, not without gratitude and awe, What are the odds? and I answer, There are no odds, because that phenomenon simply should not have happened, but it did. And only I saw.  Just imagine: trillions of such impossibilities happen spontaneously in nature every day somewhere on our miracle globe.  I left for work and hefted throughout the day Dad’s anxiety about thatching and fertilizing the lawn before Thursday’s snow and rain, and I arrived at home with bags of crabgrass-killing fertilizer, costing an obscene $100 for a single application and stinking up my car and causing me to choke with real or imagined chemical fumes.  But before I could fertilize, we needed to race the mower over the lawn, the blade set low, to suck up all the thatch and pine needles.  “Dad, are you up to it?”  Of course, he wasn’t.  But I bundled him into his power chair anyway, after Mom rebandaged the six-inch S-curve stitched incision on the top of his head and covered the bandage with a spacious straw hat.  But the hat’s brim and the chair’s headrest conflicted—will the indignities never end?—so I quickly allen-wrenched the headrest out of the way, and out the front door he went.  Dad transferred from the chair to the lawn mower with great difficulty and with noisy lifting and heaving and shoving from me.  This mower was not designed for 87-year-old paraplegics.  With fresh gasoline, thankfully, the mower started up, and off Dad drove.  Dinner would have to be made, so I rushed into the kitchen to put the meat in the oven and start the squash to steaming, listening for the moving mower and watching Dad through the open shutters of the kitchen windows as he zoomed contentedly back and forth, filling both bags with dead grass and pine needles and dust.  Finished, he pulled up to the garage and killed the motor while I emptied the dusty bags.  But the mower would not start again.  Examining the engine, I found that one of the battery leads was corroded and encrusted, and the red wire had snapped off its lead.  This mower was not going to start, though I had scraped the encrustation off and touched the wire to the lead.  Nope—this mower was dead, and Dad would have to call the service center, again, to have them come pick it up.  I lead the way up the ramps and into the house, frustrated at the entropy that breaks everything down, frustrated that I could not fix the mower but had bruised my knuckles trying.  Dad suspiciously did not come through the front door, and, checking on him, I found him stuck where he had cut a corner too sharply and had sunk the central wheel into the mud.  “I fell in a hole,” he said sheepishly with a dubious grin.  I yanked the chair out, and he left a muddy trail up the ramp and through the door and across the floor to his recliner.  A chop stick cleaned the treads.  A broom swept up the drying dirt.  And I backed the chair, which had done a fine job and was not responsible for the wreck, cautiously into its dark corner in Dad’s office.

Courage at Twilight: A Magic Box

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The sconce light on the garage had worked itself loose in winter’s gales, and when the finials fell off, the fixture hung by its wiring, daring me to fix it. I did not take the dare for a month, but finally found the courage to attempt.  Home from work, ready to face the challenge, I heard Dad call me over.  He detailed for me his “mental list” of chores he needed to do, including 1) power thatch the lawn, 2) purchase crabgrass and weed killer fertilizers, and 3) apply the fertilizers.  He was clear that this was just his mental list, and that the chores needn’t be done right away, although rain was forecast in two days.  He thought he would hire Victor to do the work, but I told him I could and I would do them, and he should save his dwindling funds.  I promised to pick up the fertilizers tomorrow on my way home from work, to run the mower over the lawn, and to spread the fertilizer, this last one a quick and easy chore, for me.  He wishes keenly that he could do the work, but he just cannot.  Maybe, just maybe, I can push him in his wheelchair down the ramps and into the garage and help him transfer to the riding mower (a most difficult machine to mount), just last year a doable and delightful chore for him.  I am willing to try.  But today I had planned to attempt the sconce light repair, I told him, and walked outside to study the situation for a long spell while attempting to envision a solution.  I could salvage the two brackets, though they had twisted a bit in the world.  And the wiring remained intact.  But I could I find the right bolts, nuts, and washers in Dad’s bolt box?  Bolts and nuts can be hard to match for their varying thicknesses and treads.  I had scoured the blue metal box as a teenager when learning to fix broken things and to assemble my own creations, and the blue box never left me wanting: I always found the hardware I needed.  The box seemed to have a bottomless supply of bolts, screws, washers, and nuts, with an occasional hinge, and I enjoyed the clinking sounds and the rough poking on my fingers as I rummaged.  The box seemed a tinkerer’s tiny treasure trove.  The box was Dad’s meager inheritance from his father, Owen, who in turn received the box from his father, Nelson—both Owen and Nelson died before I was born.  And today, a century after, here I was searching for, and finding, exactly the hardware I needed.  “It must be a magic box,” Dad mused as I boasted of my success.  Indeed, it must be, in more ways than the supply of random parts, but also the sounds and scratches and smells that carry me back generations to my forefathers, master mechanics in the mines of Utah and Nevada.  Truthfully, I was more relieved than proud to have succeeded in remounting the fixture to the brick, and whispered a “thank you” to heaven to have been spared the frustration of very possible defeat.  Mom just had to come and see the makeshift repair, and we stood staring at the light with delight.  As the sun began to set, I suddenly knew I needed to get Dad out of his recliner, out of the house, and into the cool twilight sun for a “walk”—winter has been so long, and the snow finished melting just yesterday.  Dad struggled into his power wheelchair and zoomed away toward the front door and the ramps that followed—I called after him a warning that his new chair is much faster than the loaner—in fact, I had just tested top speed and had frightened myself careening through the house, with G-force sensations similar to flooring a Tesla (well, almost).  I gathered Mom into the other chair and pushed her down the driveway and up the sidewalk, Dad tooling independently behind, feeling a new awareness, similar to the pleasure of walking one’s beloved pets—but not quite—and somewhat like the simply joy of walking one’s children around the block—closer, but still a bit off—and I thought how nice it was to be able to take both of my parents for a walk in their wheelchairs at dusk.

The magic box and the sconce light:

Courage at Twilight: To the Brim

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Two hours before the CNA came, Mom met me at the top of the staircase and motioned for me with her finger. She whispered that the urinal was full to the brim, and she worried that if Dad woke and needed the toilet before the CNA came, the bottle might spill.  She asked me to empty it.  “I was going to do it myself, but then I saw you and thought, ‘He’s the perfect victim—I’ll ask him to do it.’”  Her request touched off an internal mental struggle.  One voice chided, If she was going to do it, that means she was capable of doing it, and she should do for herself what she can do, and ask me to do what she cannot do.  An opposing voice stepped in with, Wait a minute!  I am here to help my father and my mother, to ease the burdens of both.  I pushed the selfish voice away and answered, “Sure, I’ll take care of that.  I’d be happy to.”  And in ten seconds I had emptied and rinsed the urinal and flushed the toilet, all while Dad slumbered.  The day was Saturday, and on Saturdays the CNA comes at 9, not the weekday 9:30, always surprising Mom by being “early.”  I opened the front door when the doorbell rang, and let the CNA in.  “Hi, I’m Jared,” he announced cheerfully.  I had never seen Jared before.  Mom rode down slowly in the stair lift chair, glaring unhappily at the new face that came at 8:50, ten minutes earlier than “early.”  But Jared won her over within those ten minutes, and Mom loved the short obese scraggly-bearded tattooed middle-aged man like a long-lost friend, asking him where he was from, if he had a family, where he went to school, how long he’s been a caregiver.  Jared cheerfully answered all her questions, then turned his attention to Dad.  Jared being new, Mom and Dad had to explain yet again all the little particularities of how things are best done, with using the walker, showering, dressing, transferring between various sitting surfaces, riding the stair lift (Mom insisted he ride it up the stairs to reach Dad, instead of walking up the stairs and bringing up the chair with the remote), eating his breakfast, taking his pills, and doing his upper-body rubber-band Pilates.  While Jared was learning the ropes, I was delving into my transient past, moving out of their hastily stacked places my beds, boxes, artwork, decorations, tools, and books, rearranging them more carefully, efficiently, and accessibly, reminding myself of what I own that I have not seen for 20 months, still finding it strange to have much of my life packed up in boxes.  In a shoebox I found old family photos Mom saved and gave to me, including one of me ready to baptize Hyrum, age eight, both of us happy and dressed in white.  I scanned and emailed the photograph to Hyrum, now 21, a missionary for his Church in Brazil, teaching the Good News of Christ, inviting others to enter the baptismal font, dressed in white, to be baptized, immersed, symbolically cleansed, to make a covenant with God to keep his commandments, to care for the poor, to mourn with those that mourn—the best kind of promises.

(Pictured above: Yours truly and my son Hyrum, age eight, on his baptism day.)

 

Hyrum today, a two-year volunteer missionary for the Church of Jesus Christ of Latter-day Saints, in Brazil.

Courage at Twilight: Drying the Dishes

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Home from work, I cleared the countertops and sinks of cups and bowls and spoons, loading them in precise fashion in the dish washer—I know exactly how each piece fits in its space. For decades I have taken great offense [hear my self-pitying sigh] at finding a dish in the sink after I have used copious quantities of my time and energy to empty the sink, and since I am the one that empties the sink, leaving a dish in the empty sink implies an unfair presumption that I am the family dishwasher servant [more self-pity].  When Mom takes these random dishes out of the sink and puts them in the dishwasher, I thank her, and am grateful for her courtesy to me.  But it was time to stop ruminating and to load Dad into the Faithful Suburban so the dermatologist could examine this tag and that mole and this scab that will not heal, the skin doctor who is smiley and polite but profoundly disinterested.  “Hello!  How are you!”  Three minutes of examination, and a declination to remove this or that because it is harmless even if Dad does not want this or that attached to his body because it does not belong and asks to have it removed.  “Good-bye!  Have a great afternoon!”  I had terrible trouble getting Dad into the car, both times, succeeding only with an ungainly combination of pushing and lifting and shoving until he was on the seat and my muscles quivered and my lumbar complained.  I had wondered what I would do if he could not rise from his wheelchair or if he collapsed once risen, and I had no answer—the only answer was getting him in somehow.  “That was our last trip to Dr. Jensen,” I whispered to mom, distressed.  And that distress and my tweaked back stalked me through making dinner and eating dinner and cleaning up after dinner and up the stairs and down the weeks and months of wakings.  But Mom is sweet, and recently has taken to putting aside her needlepoint and shuffling over to the kitchen sink to towel dry and put away the pots and pans I have just washed, and I appreciate her effort to say thank you with a towel and an empty sink.

(Pictured above: felt rose craft I made for Valentine’s Day.)

(Pictured below: my valentine from my sweet granddaughter Lila.)

Courage at Twilight: Good-bye Old Friend

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“Will I see you in the morning?” Mom asked me as I waved her a good-night. She never sees me in the morning: I leave for work before she wakes.  Except for the day Stanley Steamer came to blow out and suck out all the dust and debris from the heating and air conditioning ducts.  Mom arose early for when the Stanley guys came, and they came just as I was leaving.  I stayed long enough to show them the furnaces and to interrogate them about their procedures for how they would prevent clouds of dust from erupting from the registers to coat the furniture and soil the newly-cleaned carpets.  Their explanation satisfied me.  Showing them the upstairs furnace, Dad staggered from his room and confronted them with an intimidating glare and growling, “How are you going to keep clouds of dust from erupting from all the registers and coating the furniture and soiling the carpets you cleaned just yesterday?”  I got to hear the shpiel twice.  Dad continued to be suspicious, but I told him I was satisfied.  Mom saw me that morning.  And she sees me every Friday morning because the Mayor allows me to work remotely from home on Fridays, so I can commute the two-hour round-trip to Tooele only four days a week.  Today she interrupted my work with a knock at the door, handing me three business cards for tree trimmers, and informing me the giant blue spruce had blown over in the night, unable after 25 years to withstand the 65 mile-per-hour gusts tearing through the valley.  Playing lumberjack was not what I wanted for today.  I told her I would not call them and we would not be spending $1,000 to have the tree cut up, and that I would do it myself.  Changed into my work clothes, I sized up the situation, grabbed Dad’s electric chain saw, and set to work cutting limbs off the tree.  That tree was special, a big blue spruce anchoring a line of tall junipers, buffering the back yard against the noisy traffic passing day and night on the collector street.  Where it had stood now gaped an unprotected gap, every driver able to gaze into our back yard, the car noise augmented.  There was nothing to be done but to cut up the tree.  I love trees.  I even hug trees, the special ones, like the redwoods in California and the sequoias in Yosemite and the cypresses in Kentucky and the oaks and tulip trees in North Carolina and the mimosas and maples in New Jersey.  I patted our fallen spruce and whispered, Good-bye, old friend, I will miss you.  Starting at the base, I methodically cut each limb from the trunk, stacking them in huge piles, and with each cut I felt a twinge of sadness for the loss.  I heard a knocking on the kitchen window and waved to Mom who waved to me.  Half of the shallow roots had torn out when the tree fell, while the other half kept the tree suspended at a perfect height and angle for me to dissect it.  With the limbs all removed, I bit the saw into the trunk and piled the logs on the park strip as free firewood.  I miss my wood burning stove that stayed with the house I had to leave seven years ago.  I miss the sounds of crackling wood and expanding iron, the orange glow through the glass, and the heat wafting outward with the perfumes of melting crystals of frankincense and myrrh.  Unbeknownst to me, Mom was so worried about my doing the job alone that she called a neighbor lady who called her husband and told him to come help me.  With his jeep and winch, he pulled the stump out of the ground, then shoveled soil back into the hole.  Dad, after showing no interest in his power wheelchair for six months, suddenly insisted on riding it out the front door and down the ramps and along the sidewalk to see his friend Burke and the result of our work on the tree.  The wind blew 50-degree air over the deep snow, melting it measurably before our eyes as we worked.  My body aches, but the job is done, and I have said good-bye to an old friend.  Will we plant new trees to fill the gap, new friends to replace the old?  We must.

Courage at Twilight: Dusting the Chandelier

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The reunion is not for another month yet.  But Dad wants everything to be perfect for his former missionaries when they come.  He has made a mental list of all the little jobs he wants done, though he does not say he wants me to do them.  He and Mom have not been able to hold an April reunion for two years due to Covid-19.  But on March 31, up to one hundred of them, all dear friends, will descend upon the house and descend the basement stairs to tell stories and sing hymns and eat Brazilian food and bask in love and memory.  As their mission president, he was a young 36 (Mom 32), and they about 20.  Now he is 87 and they about 70.  As Dad rattled off his list, he tossed sections of the New York Times from his chair to the couch—better than dropping them on the floor to be tripped and slipped on, although sometimes he misses—and I grabbed pen and paper to write the tasks.  (I can remember a list of only two things; give me three and I am sunk.)  The first task was to clean the chandelier and replace all the bulbs, and I volunteered.  I could see no dust or grime, and all the teardrop lights worked fine, so I thought it a wasteful task.  But to honor him I dragged in the ten-foot step ladder, climbed to inspect, brought up a pack of baby wipes to wash off the dust, and swapped out all seventeen bulbs.  While I could see nothing wrong with the chandelier before, now it seemed to shine with twice its prior brilliance.  Most important, Dad was happy, which made Mom happy.  While I question the wisdom of a reunion, not wanting to see Dad push himself into an exhaustion difficult to recover from, the camaraderie will make him immensely happy.  And who knows if this will be the last reunion he hosts.  Dad’s days are growing shorter and shorter, by which I mean he rests longer and longer at night and during daytime naps.  He no longer reads until three in the morning.  Even midnight has been trimmed to 10:30, when Mom helps him upstairs after the ten o’clock news.  He keeps a volume of the encyclopedia upstairs and another downstairs, to sneak in minutes of study between CNAs and naps and Mom’s NCIS and meals and voyages to the restroom.  Upstairs is volume “A”.  I heard him telling Cecilia all about Air and Africa.  Downstairs is volume “R” and he reads until his bladder forces him to move.  I have wondered what should be my reaction to his grunts and groans as he moves around.  Are they signs of acute distress to which I should run in response?  Or are they a learned habit reflecting a pervasive state of chronic daily distress?  I know I cannot live my life poised tautly on the brink of anxiety, responding in a rush to all his distress, which would become my own acute and chronic mental distress.  I would break down teetering always on the edge of emergency.  My present reaction is to continue my activities while listening with one ear for signs of extreme distress, like Dad yelling, “Rog!  I need your help!”  That is when I run.  Far from acute, but still distressing, is when Dad or Mom ask me about things I have just finished telling them about.  I brought home from Zacateca’s Market three Big Burritos, filled with chopped steak, and announced the steak-filled burritos for dinner.  Taking a bite, he asked, “Is this steak?  My burrito has steak in it.”  Yes, I respond, I just told you it was a steak burrito.  “Oh,” he said, both of us feeling bad, for different reasons.  I am learning too slowly to be patient with fading memories and ears hard of hearing.

Courage at Twilight: An Argument over English Muffins

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Sleepiness oppresses me on my hour-long drive after Wednesday night City Council meetings.  I often arrive at home after 10 p.m., in time to sleep and make the return commute the next morning.  My late-night commuter ritual includes a stop at Macy’s grocery store for a bag of bulk milk chocolate almonds or lemon yogurt almonds or Bit o’ Honey candies, which I munch compulsively until they are gone or until my stomach growls at me to quit.  On less disciplined nights, I fall for Franz donuts and chocolate milk.  This bad habit has become entrenched, and needs to be reformed.  So, I bought instead a bag of raw peanuts, having the virtues of being tasty, cheap, healthy, and wakeful.  Healthy and wakeful and cheap they may have been, but tasty they were not.  I reckon I am too accustomed to salted roasted nuts to enjoy them raw.  Mom wants Dad to avoid white flower breads, due to diabetes, and since Dad has been enjoying English Muffins, she instructed me to pick up the whole wheat variety: tasty and healthy.  My stomach gnawing for dislike of raw peanuts, I toasted a whole wheat English muffin, topped with butter and raspberry jam, and crunched off a bite with high anticipation.  But the taste and texture were awful.  The next morning, Dad declared, “Rog, those whole wheat things are not English muffins, they are just bread, and they’re awful.”  I was ready to concede they were awful, but not that they were not English muffins.  “Yes, they are English muffins,” I countered, “but made with whole wheat flour.”  “No, they’re just bread.”  “They are not just bread.  You may not like them, but they are still English muffins.”  “They are not English muffins: they have no wholes in them: they’re just dark round breads they call an English muffin.”  “Well, it doesn’t matter,” I yielded, “because I bought some white flour English muffins I am sure you will like,” and toasted him one.  Though arguing over nomenclature, we agreed they were horrible, and I threw them away.  That night brought 15 inches of new snow, followed by hours behind the snow blower.  CNA Cecilia called to report the roads were impassable, which they were, and apologized for not being able to come, which we understood.  While I pushed snow, Mom helped Dad shower and dry and dress.  I settled Dad to his chosen breakfast of yogurt and a toasted white-flour English muffin with butter and sugar-free jam.  I had not thrown the raw peanuts away because Dad suggested a little hot oil and salt in my iron pan might roast them nicely.  My roasted and only slightly-burned peanuts were in fact tasty, in addition to being cheap and only slightly less healthy.  The roasted peanut aroma permeated the house as I wandered to the basement at one in the morning to flip the heat cable switch so the gutters and downspouts would not fill and freeze.  I followed a whining sound to a glass bowl containing Dad’s hearing aids, and opened them to disconnect the batteries.  I munched a few homemade peanuts.  The snow continued to fall.

Courage at Twilight: Locked Out

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My bladder badgered me out of bed at one in the morning. Relieved, I staggered in the dark back to my room, but could hear Dad’s voice coming from his.  I tip-toed nearer, to hear.  He was praying to God, his Heavenly Father, beloved, trusted, imploring on behalf of his posterity in their adversities and afflictions.  “I find it so interesting,” he had told the young men of the Church, who brought him the sacramental bread and water last Sunday, that God, who is the Master of the Universe, the Creator and Overseer of over 100 billion galaxies each with more than 100 billion stars, yet he knows each one of us and nurses us gently along in our precept-by-precent learning.  “He knows me.”  Time after thousandth time He has made himself known to Dad in the course of his service to others, like when he saw in vision the widow sitting alone in a very dark house on Christmas Eve, dangerously depressed, and he hurried Mom and us children into their 1971 Dodge Dart and drove us to her house, where we found her exactly as he had seen, and we turned on her lamps, we handed her gifts, we set up a small Christmas tree with colored lights, and we talked to her and sang her a carol or two.  Pure religion, indeed.  I left Dad to his prayers and went back to bed, his faithful importuning stirring in my sleepy brain.  The next morning, his CNA came early.  Cecilia, Dad’s normal weekday assistant, could not come, and had sent Sophia in her place, a new face, a new voice, a new set of stories, someone else to train in the particulars of his care.  Having a new CNA arrive, without warning, is upsetting to both Mom and Dad.  They develop a trusting affection, a cheerful acquaintance, with the CNA’s.  Dad develops a comfort level in his utter vulnerability with the CNA’s.  With each new face, Mom and Dad must adjust and come to trust, again.  Beside Cecilia, whom they love, there have come Leah, Beatrice, Shawn, Erin, Stacy, and Jen.  Each has been pleasant, patient, and competent.  They do their caregiving work without making Dad feel a single drop of shame.  How grateful I am that every day they cheerfully help him out of bed, help him undress, shower, and dry off, help him dress, escort him downstairs, join him in Pilates, and make his breakfast of eggs and toast and Cheerios.  I know a beautiful devoted woman with a bearded dragon for a pet who did all this and more for her dying father—she gave all the love and energy her spirit could muster, and more, and took months to recover her sense of self, yet still grateful she could serve her gentle, beloved father.  What strength.  Trying to avoid Mom’s and Dad’s attention in a quiet moment, I tip-toed into the garage and turned the lights on, searching for a tool for my little crafty project, when Mom poked her head into the garage, saying nothing, not seeing me, then turned the lights off and closed the door.  I stood inconspicuously in the corner, with the tools, unconcerned until I heard the deadbolt turn.  Then I sprang into action and pounded furiously at the door to be let back in.  She had not shuffled far, and soon opened the door.  I had overreacted, obviously, with my dramatic pounding.  How easy it would have been for me to open the garage door and enter the house from the main entrance.  At worst, I could ring the doorbell.  Mom let me in, shocked and sheepish.  Later she grabbed my hand and with tears in her eyes apologized for having locked me in the garage, and I rued my reaction.

(Pictured above, Mom’s completed book of 108 word search puzzles.  She is making inroads into the new puzzle book.)

Courage at Twilight: Chairs at a Funeral

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The call (or rather, the email) had gone out to all the men of the church: our help was wanted on a Thursday night to set up chairs and tables in preparation for a neighbor’s funeral the next morning. The eight of us that came set out rows of padded chairs in the large multi-purpose room, back of the chapel, in which were held church parties, youth athletic events, evening classes, and dances, providing also overflow seating for Sunday services.  It became quickly obvious that the room’s carpet should first be vacuumed clean.  But our vacuum cleaners would not work, one not picking up, the other dropping dirt out.  Kevin and I turned over and dismantled a vacuum cleaner, finding a tight clog of dust and hair and cupcake sprinkles packed in the intake tube.  Clearing the clog, the machine worked wonderfully well.  I installed a new bag in a second vacuum, and discovered that the power roller would not engage until the intake tube was not pushed sufficiently tightly into the power unit.  Soon it, too, did its job admirably.  The deceased’s viewing had ended, the visitors had left, so I ventured out to vacuum the hallway.  Long tables lined the hall, covered with white embroidered cloths, framed photographs, and a lifetime of her memorabilia, suddenly just stuff.  I shuddered as I peeked into the viewing room and glimpsed white hands crossed and still in a white casket.  And a thought struck me with force and with fright, that those hands could have been, or soon may be, the hands of my father, aged 87, or my mother, aged 83, and I will be sitting sad in that room while someone else vacuums the floors (perhaps after cleaning or repairing the vacuum cleaners) and rolls out the tables and sets out rows of pink padded chairs for the funeral the next morning at which I will weep and speak and say I know not what.  But I fled the hallway, finding it sufficiently clean, and rejoined the seven others to finish our job.  After the funeral, and after the burial, the family would return to gather and to sit on our chairs at our tables on our clean carpeted floor and consume the meal the church women, the local Relief Society, had prepared, a meal of sliced ham and shredded potato casserole topped with crushed corn flakes, and colorful Jell-O cubes or green creamy pudding with miniature marshmallows, and baskets of little rolls.  But I will worry no more about all that today.  Today I will worry about the next made-from-scratch meal, lately from Half Baked Harvest, perhaps Granny’s Meatballs, or Coq au Vin, or Potato Chip Chicken, and I will worry about being happy in this life of mine, brought to be by my choices, and the choices of others, a life of abundant blessings and plentiful trials, and long slow line-by-line learning.

(Pictured above, Tieghan Gerrard’s “Granny’s Meatballs” recipe from Half Baked Harvest, stewed in red wine and seasonings, topped with Mozzarella and Provolone, making a nice Sunday after-church dinner.  Have I told you before, I love my iron?)

Courage at Twilight: All Creatures, Great and Small

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I had bought the three hardbound books three decades ago, and they sit still unread on my bookshelf. But Dad, bored with his own library, picked up volume one and thoroughly enjoyed following Herriott on his rounds in rural Yorkshire.  As much as Herriott writes about animals, his true subjects are the animal owners, with their eccentricities and superstitions and their pure humanity.  Dad read All Creatures Great and Small, All Things Wise and Wonderful, and All Things Bright and Beautiful, then reread All Creatures, reading for hours at a time, chuckling quietly to himself, telling Mom and me stories of fearsome pigs and troublesome calf deliveries, and I remembered how much our family enjoyed watching the original BBC production.  In the spirit of the misty moors, I purchased the complete seven years of All Creatures on DVD for Mom and Dad to enjoy—an alternative to grisly crime shows—90 episodes over 12 years.  And then the old VHS/DVD player broke, swallowing a disk whole, so I brought home a new Phillips DVD/BR player from Wal-Mart.  The closed captions worked only on the first episode, and now Mom and Dad cannot follow the stories for Siegfried’s incomprehensible mumbling and shouting.  But Dad knows all the stories from his reading.  As she watches, Mom alternatively works her latest needlepoint or hunts for words in the puzzle book Jeanette gave her for Christmas.  I found the puzzle book in the recycle bin, all 108 puzzles completed, all the words found.  Who knew she would enjoy them so much?  Jeanette sent new a new book with even more word search puzzles.  On the afternoon Mom went to the dentist, she did neither needlepoint nor word searches, relaxing into her recliner, waiting for her face to come back to life after having a cavity filled and an old broken crown drilled out.  Her poor upper lip just would not work at all for three hours, and for a hundredth of a second flashed in my mind the specter of the dentist pulling all her upper teeth.  He had not of course.  Dad opened the back door and pulled his wheelchair close, watching me finish the last of the arctic willow pruning.  The bushes now look relatively round, and proportionate to their surroundings, with all the dead wood cut out, and another garbage can filled to the lid.  “I wish I could help you,” Dad called.  I stopped my work and approached with the consolation that as soon as the weather warmed a bit, and the grass dried out some, he could venture outside in his power wheelchair and do just about whatever yard job he wanted, including weeding with a hoe, trimming the bushes, edging the lawn, and general inspection.  He could even ride his chair into the garage to transfer to his riding mower and cut the grass.  He nodded and smiled and offered a simple “Yes” and that he looked forward to that.  Saturday’s work done, and our Coq au Vin dinner pleasurably consumed, and the kitchen cleaned and washed and put away, I sat down with the craft kits I had purchased and assembled, painted, and clothed four Valentine’s Day gnomes, little people that sit cutely on the hearth spelling the word “LOVE.”

Courage at Twilight: Standing Guard

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Dad explained that with the hard plastic mat under his new office chair, he could not stand up from it because the chair moved chaotically around beneath him on its coasters, and he invited me to remove the mat.  This was fortunate for me since my mat was cracked and broken.  A week later Dad remarked that without the hard plastic mat under his new office chair, he could not move the chair at all because its coasters sank into the shag and refused to roll, and he is stuck, too far (three feet) from his walker.  He asked me to return the mat.  I had since thrown my broken mat away, so now my chair is stuck in the shag.  As I carried the mat downstairs in the early morning, Mom walked past the door of her dark room dressed in her long white night dress.  She joked with me later that I must have thought I had seen a ghost.  I rejoined about having seen an angel with white hair in flowing white robes.  She laughed.  Bringing Dad home from the doctor at the end of the day, I prepared to build momentum to roll him up the long ramp.  (I am amazed at the gravitational difficulty one single foot of elevation makes behind a loaded wheelchair.)  “Where’s my javelina?” he interrupted.  “We just passed it,” I replied, not about to stop our progress mid-ramp to point out the pig.  I position the pig at the foot of the ramp, a warning to would-be ramp walkers (trippers), but moved it to make way for him and his wheelchair.  “Well, make sure not to leave him out in the rain and snow where he will rust too much,” Dad instructed.  You may recall that this particular javelina was plasma cut from a sheet of pre-corroded sheet steel, intended to mature with age and element, to continue rusting out of doors, the surface corrosion adding to the sculpture’s rustic charm but not damaging the structure.  I admit to returning the javelina to its guard post after depositing Dad inside.  But he was pleasant all evening, he praised my dinner of spicy chicken-and-sausage dirty rice, and this morning, when Cecilia asked cheerily, “How are you?” he responded with his trademark, “Marvelously well, thank you,” and moved on to his life’s great physical challenge: the journey to the shower.

Courage at Twilight: The Weight of Snow

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The backyard willow bushes were no match for the extraordinary snow, deep and heavy.  Branches broke and trunks twisted, nearly all of them.  My Saturday chore, after the snow melted in a sudden thaw, consisted of cutting out the broken wood and chopping it up and cramming it all into the big garbage cans for Monday’s pickup.  And I raked up piles of rotting leaves pressing on the grass against the rock wall, topping off the cans.  It is only January, and I asked myself why I was doing this chore now instead of putting it off until spring.  Because it needs doing was the simple answer, and I wanted to be outside.  Mom’s lower limbs still function but bend on stiff and painful knees, and she drove herself to the orthopedist who numbed her knees and inserted long needles that delivered impressive quantities of yellow steroidal liquid that will calm and lubricate the machinery for another six months.  She feels better now, but sees no reason to prove the point on the stairs, opting instead for the knee-saving chair lift.  Dad’s own legs have failed him, being of practically no utility and instead being a great nuisance of weight to be dragged around.  Though his doctor has seen him four times in six months, and knows first-hand Dad cannot walk, Medicare insisted on yet another face-to-face visit (we’re all for preventing insurance fraud) for the sole purpose of documenting Dad’s need for a power wheelchair.  So, Dad risked injury and jeopardized health to travel to his injury risk manager and health care provider to document his already well-documented decline.  A year ago, I had little notion of the complex (for me) and arduous (for Dad) procedure of transporting an overweight infirm 87-year-old to and from appointments.  Relieved to be back at home, Mom and Dad rested in their recliners, and I bustled about in my cooking apron.  The thermostat showed the temperature dropping, and Sandy’s public works department emailed to warn of freezing pipes (100 houses had burst pipes the night before), and advised the city’s population to leave a pencil-stream of water running in the kitchen sink—moving water is less likely to freeze—wasting the water we prayed so fervently for in our Utah desert clime.  At 6:00 the next morning, my phone announced the temperature of the air outside my window: 1⁰ F.  Our pipes did not freeze.

Courage at Twilight: A Still and Silent Pen

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My pen has been still and silent.  No pleasant scratching of the nib with Shoreline Gold on porous paper.  No clicking of the keys.  But my mind?  Though my tongue is quiet, my mind screams what cannot be written for want of vocabulary, for want of courage, and for fear of offending the innocent.  I spent a week away, helping family move along a flip house toward the closing that will pay the debts and determine the quarter’s income.  I painted, schlepped, installed vanity lighting in three bathrooms, and installed six ceiling fans, dubbing myself the Ceiling Fan King.  Jeanette worked with me, cutting, twisting, and splicing wire, holding parts aloft for long periods of time while I installed insanely difficult-to-insert screws, bolting on fan blades (making sure the right color faced down), and leveling light bars, and by some miracle our record of correct installation, meaning the lights came on, was 11 for 11.  And my sighs of relief were 11 times audible and sincere.  And then the time came to leave for home, the home I cannot seem to make my own because it is not my own, but someone else’s, in which I borrow a small space, in which I produce culinary delights, with flops here and there—which Mom and Dad still call brilliant—because I’m not a nurse but a general problem solver and cook.  And I am shouting again because they do not wear their hearing aids and I would rather shout that say everything twice with a “What’s that?” in between.  And Dad dictates the news as he reads it from the New York Times: 35,000 Russian men seeking asylum to escape conscription for Putin’s aggressions in Ukraine; former President Trump’s latest lunacy; the ongoing hunt for dark matter.  And Dad says again the absurdly obvious, “Lucille, I’m getting weaker.”  Last week, Mom gave me a page from her 1983 journal, written when I was 18 years old, after I left home for college, when a mother’s heart broke for the first departure of her firstborn.  “I miss Roger,” she wrote.  “There are so many things a mother feels for her children.  They are just very dear to her.  She remembers nursing them as tiny infants, carrying them around as little children, making cakes and going on walks, helping them in school, etc.  She remembers hugs and kisses and little things they made for her.  Then the children leave, and it is hard for her.  The empty bedroom, the missing place at the table, all the little things that were fixed or made better by them.  At the same time, it is right that children leave.  They grow and become independent and contributing adults.  That’s the way of it.  Roger will always be a part of me and I will always love him.”  I do not think I have ever read a sweeter rumination about the pining sweetness of a mother for her child.  And here I sit, home again—to stay—at 58, a full 40 years after leaving that first time, and Mom remembers my leaving still and appreciates my coming home all the more, and calls me “Dear” and “Baby” and asks me to text her when I get safely to work, and asks about my day when I come home, and has a problem or two for me to solve, which I solve, and clings to me sweetly with the softest skin of an old woman’s hands.  And the next time one of us leaves home, it will be her, and I will miss her, and I will gaze into the empty bedroom, and I will remark the missing place at the kitchen table.  And I will write my feelings about it all, though for a while my pen will be as still, and as silent, as the empty house.

(Pictured above, Mom at 82 holding great-grandson Wiggy.)

Courage at Twilight: Members of the Tribe

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My ears are attuned to every little sound: the clicks of the break release handles on Dad’s downstairs walker; Mom’s syncopated shuffle; the single beep as the stair lift arrives at the end of the track, upstairs or down; cursing from the bathroom. This morning I awoke to the muscular sound of an industrial-strength vacuum in the master bedroom.  Through the doorway I saw Dad sitting on the walker seat and pushing the carpet cleaner forward and back next to the bed.  I did not ask, but I knew without asking.  His weekday CNA Cecilia—faithful, pleasant, and kind—came shortly after and helped him shower.  From my home office I could hear their one-way conversation: she said very little.  “Do you know how old the earth is?” he asked her.  “Four and a half billion years old!”  He knows and loves the Bible and its God, but informed Cecilia that “God did not make the earth in six days.”  Rather, He probably took billions of years to make our globe.  Dad explained to her about the sun burning hydrogen in nuclear fusion, with enough hydrogen still to burn brightly for billions of years more.  He told her that the only way we know how to use nuclear fusion reactions is with a hydrogen bomb, and referenced the atom bombs dropped on Japan.  He expounded about ocean currents, and about the hydrologic cycle of evaporation and precipitation and the rivers of water vapor coursing through the skies, and about Argentina’s defiant propensity to default on its international debts, and about the formation of galaxies and stars.  “I like to know things,” he summed up.  Cecilia, an excellent listener, interposed an occasional affirming “really?” and “oh.”  He told her about our family visiting an Indian tribe in Brazil in 1974, and how the tribal elders would not let us into their compound without being members of their tribe, and about how the tribal elders allowed us to become members of their tribe by following them on a course through the grounds and buildings, ending at a ceremonial tree, and about how we bought blow guns and bows and arrows from the indigenous women of the tribe.  This is a true story.  I know because I was ten and I was there.  Dad’s stories sometimes jump from one unconnected subject to another, shifting like an old car with a worn out clutch.  Dad lamented to Cecilia, “A few months ago I was a normal person.  I could walk.  I could do things.”  That is not true.  I know because I am 58 and I have been there with him, watching the insidiously steady downward degeneration culminating in painful undignified immobility and having to use the carpet cleaner in the mornings.  He is not untruthful—he just forgets.  And he cannot retrieve his books from his bookshelves or his checkbook from his desk or a glass of ice water, and has to ask Mom and me to fetch these and other things for him.  He asked me to bring him Mom’s youthful portrait from his desk, placing it on the end table by his recliner, where he can see it all day as he reads.  I remember seeing that portrait of Mom on his desk thirty years ago when I visited his New Brunswick office in the Johnson & Johnson tower.  He has gazed at Mom’s youthful portrait for more than six decades, and he tells Mom everyday what a wonderful person she is, and that he loves her.  And he steals hugs when she walks by, and she returns the hug and runs her fingers through his sparse wispy hair.

Courage at Twilight: Count Your Blessings

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(This chapter was to be posted on December 10 but I neglected to click the “publish” button!  Hopefully, better late than never.)

When one counts one’s blessings, should the recounting of one’s afflictions come before or after? Or at all?  I am certainly greatly blessed in having moved from my solitude to my parents’ home.  Living the legacy of faithful family.  Serving and contributing and giving care.  Cooking and shopping and driving and repairing and cleaning up.  The gratitude and love and support of one’s devoted parents.  Reading dozens of books during my commute.  But the coin’s obverse also reveals itself, sometimes painfully.  My state-mandated divorce class emphasized how harmful is a parent’s geographic distance from a child.  I have paid a price by living an hour away from my teenage daughter.  We used to share an evening a week, and some weekends, cooking, baking, listening to music, playing games, sitting in the hot tub, doing crafts, conversing, dreaming.  Now I am lucky to take her to lunch twice a month.  She is 16.  She just earned her driver license.  She takes voice lessons and sings at church and in an audition choir.  She feels so far away.  In a similar vein, pursuing a romantic relationship has proven impractical what with the worries and fatigues of caregiving and homemaking.  Though I have dated, the added stress of relationship building (and, more to the point, relationship failure) has heaped new heaviness to my burdens.  My sisters tell me they love me and pray for me, that God is with me, but caution me to be aware of my limits and my needs, and to express them, so I can enjoy health and happiness, too.  That is good counsel.  One date said to me, There are lots of ways of caring for your parents without living with them.  That seemed to cheapen the revelation that brought me here.  That felt like questioning my intentions and deliberations and decisions.  That belied and belittled the magnitude of my mission and the refining value of my consecration.  Moving here was the right thing to do—even a providential revelational opportunity—but did come at a personal cost.  Was that cost worth paying?    My daughter Laura encouraged me to wrap myself in Psalm 23 as I experience this caregiving phase of life: The LORD is my shepherd. I shall not want. He restoreth my soul. He leadeth me in paths of righteousness for his name’s sake.  There is no turning back.  I am here to stay, come what may.

(Image by Hans from Pixabay

Courage at Twilight: Prayer before Murder

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Mom has taken to riding the stair lift up and down the stairs, though Dad’s disability was the urgent impetus for installing the lift. She does suffer with arthritic knees, and the 21 stairs have become increasingly difficult to take on.  And even if her need is not yet equally acute, the lift is easy and pain-free and even fun, as much of an adventure as she cares for at 83.  Dad’s wheelchair routine, on the other hand, is anything but easy.  A quick trip to the dentist for a checkup and cleaning involves dozens of indispensable sequential steps, such as, transfer him from his recliner to his wheelchair; swing the foot support “arms” into forward position, and lower the foot rests; raise his legs by pulling on the tongues of his shoes; roll him in his chair out the front door, which Mom opens ahead of us and closes and locks behind us; roll down the ramps—with new confidence on the new grip-paint surface—open the front passenger door of the Mighty V8, lower his legs by the same shoe tongues, raise the foot rests, and swing out and remove the foot support arms; position and lock the chair as close to the front seat as possible, and lift by the armpits as he pulls himself mostly upright; lift his left foot into the car from behind his left knee, and push his hips with my available knee as he heaves against the handles to slide into the seat; fold and lift the heavy chair and stow in the back of the suburban.  Then reverse the whole process at the dentist office.  Then do it all again on the return trip, except that I must gain momentum to make it up the ramp, which frightens Dad in his powerlessness as I push.  Then do it all again for the eye doctor, the heart doctor, the skin doctor, the foot doctor, the diabetes doctor, the divers tests….  After depositing him again in his recliner at home, I retreated to the kitchen, and soon heard him call, “Rog, are you there?”  He wanted to tell me something from the day’s New York Times.  If I am in the same room while he is reading the newspaper, he delivers to me a verbal new reel, like today: S. Army admits botched drone strike that killed civilians in Kabul…Nineteen protesters sentenced to death in Tehran…Six-year-old brings gun to school, shoots and kills teacher…Draft pick scores 71 points in first game with new team.  “I’m here,” I reported, but thought with condemning self-examination: Are you really there, Roger?  I cook their meals, make home repairs, shop for the groceries, landscape the yards, place the decorations, run the errands, fix the computers, solve the problems, and am otherwise at their beck and call when I’m at home.  But am I really there, serving and giving, cheerful and sincere?  Or do I chafe at the chores and move through the motions and withhold real devoted love?  In many ways, my life is not my own.  I live in their house.  I eat what they eat.  I watch what they watch.  I rarely read.  I feel always tired.  Dad told me that he feels so very tired by the end of the day, and feels so very tired waking in the morning, and feels so very tired throughout the day, his reading often leading to napping.  “One of these days I might go to sleep in my recliner with my book and just not wake up.  That’s how it should be: that’s how death should come.”  He shows excitement at seeing a movie I have selected for him, then falls asleep ten minutes in.  Upon referral, we set out to watch a new murder mystery movie, our dinners growing cold on our folding TV trays.  “We should pray,” Dad reminded us, and I found myself laughing.  “Yes,” I chimed in, “we had better pray over our food before we watch our murder.”  The prayer took two minutes and the movie two hours, two wasted hours, two hours distracted from things that really matter.  I am glad we prayed.

(Pictured above: roasted vegetable bisque made from scratch without a recipe but with tips from my daughter Laura, a wonderful cook.)

Courage at Twilight: On the Edge of the Bed

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The morning sky dawned pewter gray, and leaden light seeped through the plantation shutters.  I climbed the stairs after my stationary bike ride and knee push-ups, and through a doorway saw Dad sitting on the edge of the bed, in profound shadows.  He did not move, but stared at the wall, at the shutters, and I could feel him contemplating his next move, as in, Do I have the strength to slide off the bed onto the commode?  Will this day deliver the same slow struggle?  He knew it would.  The nurse had called him the day before and had reported, “The doctor asked me to let you know your MRI looks good.”  What does that mean? he had asked.  She did not know.  But I knew.  A “good” MRI means no lumbar spinal condition is contributing to Dad’s profound leg weakness and wasting, to his paralysis.  A “good” MRI means the certainty of a bad diagnosis, of diabetic amyotrophy, incurable, untreatable, a close cousin to Lou Gehrig’s disease, amyotrophic lateral sclerosis.  The call annoyed him.  He had questions for the doctor to which he wanted answers, like, Is there anything I can do to slow my deterioration? and Is there any connection between September’s meningitis/encephalitis and today’s diabetic neuropathy?  “Your MRI looks good” answered nothing, but just eliminated a negative.  Mom called to make an appointment, and the receptionist said Dr. Hunter would see him again in four months.  (If he’s still alive, I could not help muttering to myself.)  Watching Dad sit on the edge of his bed, I pushed away thoughts of his perpetual fight against despair; I do not have the strength to absorb his angst.  But I can cook his dinner, and served a beautiful baked chicken and dirty rice baked in a French cast iron casserole.  “Thank you for this lovely dinner, Rog,” Dad praised, and Mom giggled cutely for the hundredth time at being waited upon.  We browsed through Netflix for 30 minutes, and finally settled on an obscure Norwegian movie with dubbed English dialog, and Dad promptly settled into a nap for the duration.  I used the time to assemble his new office chair, since the hydraulic piston had broken on his old chair and it had sunk permanently to its lowest height, too close to the floor for him to get up by himself.  He will feel lordly in the new (and inexpensive) black bonded leather chair, and much more comfortable as he writes letters to beloved family members, one who was injured by a drunk driver, one serving a Church mission in Massachusetts, one shivering in Montana, one in the Army in Honduras, one who is brilliant and has big questions and a good heart, and to others who he loves.  These are his last contributions, the contributions he has the strength for, little actions with big meaning for those he loves.

 

(Pictured above: chicken and sausage on a bed of dirty rice, Cajun style.)

Pretty on the plate.

The old.The new.

Courage at Twilight: Slick As Ice

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I did not lie. I was truthful.  But my truth was incompletely portrayed.  I had peeled back only one or two layers of the cathartic onion.  Perhaps a reader would not want or need more truth about my Christmas struggle.  “TMI” one of my children might say to another of my children who might catalog the day’s (bowel) movements: Too Much Information.  But I did not write this exploration for a reader: I wrote this exploration for myself, to study and understand what happens in the heart, to maintain my mental health amidst pressures not before encountered, and to remember the tangy sweet-and-sour of these last days.  I have grieved living alone.  I have grieved losing my spouse.  I am beginning to process the griefs of living with, and caring for, my dear dying parents.  My true Christmas griefs—frustratingly fresh, still, after seven years—are none of these.  My true Christmas griefs are the loss of hopes and dreams for a life with an intimate loving partner, the loss of a family unit in a church culture in which the nuclear family is the dreamed-for idyll, the loss of family-together traditions, family reunions, family camping trips, family vacations, family portraits.  I insist that we are still a family—families come in all shapes and sizes and varieties—and under the doctrine of my Church, we are an eternal family unit, connected forever and ever, if we want to be.  That this family has lost something, however—something living and vital and happy—is my sorrow and sadness and grief.  TMI, perhaps, especially for my children, who bear their own crosses of grief and loss and sorrow which they did not deserve and were not their fault.  Crosses I cannot carry for them.  But I can love them, I can lift them, I can believe in them, and I can trust them as they pilgrim through life.  And now I am part of another family, another variety of family, made up of a very old man and woman married to each other for 60 years, and their 58-year-old baby (Mom often calls me “baby,” as in “good-night baby” and she and Dad frequently tell me the old stories of when I was an actual baby in cloth diapers and plastic pants and gumming the crib railing and crawling to the cabinet to empty it of clanging pots and pans and lids)—a threesome family.  And the father of this family went to the hospital today for an MRI of his lumbar back, to look for and rule out an injury that would be causing his dramatic and worsening wasting and weakness, for Dad has no strength to walk, stand, pivot, lift or drop the foot plate on his wheelchair, lift his feet onto the foot plate or slide his feet off the foot plate, or heave himself into the Mighty V8.  What he has called “paralysis” for months, and what the doctors said was not paralysis but profound weakness, has become factually a very real paralysis.  As I walked through the garage door from work, Dad called urgently to me from the bathroom—I ran to help lift his fleece pants over his hips and pivot to lean heavily into the walker.  The bathroom routine has many procedural steps, all important, but the procedural nightmare is, ironically, a doctor visit—the doctors may kill him before his illness does, what with all the consultations and tests.  Sparing the minute sequential detail, I will mention only one step, that of rolling Dad in his wheelchair down the eight-foot ramp.  In the fall I stained and finished the ramp, and it is handsome and shiny and brown…and slick as ice when wet from rain and snow.  The snow came last night, a warm heavy snow, leaving every surface thoroughly wet, and I simply could not wheel him down the ramp today, not without falling on my backside or my face and losing Dad and the chair to gravity and the sloping driveway.  So, in a huge irony, and with great difficulty, I helped Dad up out of his wheelchair, down two steps, and back into his wheelchair, bypassing my beautiful ramp.  If the temperate 50-something weather holds (it will not—this is December 28), I will slather on a grip-paint product recommended by a neighbor, who I think is worried I will kill my dad or myself on my ramp.

Courage at Twilight: Dream Walking

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Behold: The Carina Nebula's 'Mystic Mountain' | NASA

I sat on the side of Dad’s bed to wake him on this Sunday morning, this Christmas morning, to talk about getting him showered and dressed and settled in his reading recliner. I could see that his whole body ached as he turned his head on his arthritic neck and stretched out his invalid legs and brought his arms under him to reposition.  His welcoming words were unexpected: “I have dreams…”  I wondered what kind of dreams, whether literal sleeping dreams or waking hopes and aspirations, and did not have to wait long to learn.  “And in my dreams, I am walking.”  I was touched that he had allowed me into this intimate and personal place, the place of his soul’s desires, and was touched by the aching irony of his wish to be healthy and for his body to function, but to be able to do so only in impotent dreams.  Dreams for the present broken.  “Sometimes,” he continued, “sometimes I think my paralysis has happened to me because God is trying to teach me a specific lesson.”  I personally am disinclined to believe God targets us with specific afflictions to teach us particular truths.  Rather, I am inclined to believe that the nature of this life is designed to bring us into inescapable contact with experience, and the equally inescapable choices associated with that experience.  A coworker is rude to me, for example.  That is the experience.  Will I react angrily, self-righteously, and judgmentally, or patiently, compassionately, and empathetically?  That is the choice.  And my choice—that all-powerful vehicle of self-creation—establishes the trajectory of my character.  But despite my inclinations, who am I to say that God cannot teach us in surgical fashion when he finds it appropriate?  “I want to be the kind of man who chooses to be humble of his own volition and is not compelled to be humble” by God or by circumstance.  Dad’s humility is the least of my concerns for his soul.  In fact, I am not concerned at all for his soul, only for his present comfort and happiness.  When Dad kneels before his Savior, he will look up into that glorious face and declare, “I did my best, Lord!”  That will be a sweet moment, for God accepts the offering of every effort we make for good.  With crumpled wrapping paper strewn about on the floor, and small piles of Christmas gifts on chairs, Dad sank into his gift of a Popular Science edition about outer space.  A photo of the Carina Nebula decorated the back cover, a gift from the Hubble and the James Webb.  “I love outer space,” he exclaimed.  “It won’t be long before I’m there.”

 

(Photo of the Carina Nebula courtesy of NASA, used here pursuant to the Fair Use Doctrine.)

Courage at Twilight: Moving Pieces

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Mom and I started a puzzle. 500 pieces.  It came in the gift basket delivered by the caroling young women from church.  It is a pretty puzzle of a nature scene, in the mountains, tinged with the scarlets of early fall.  Warm and pleasant, a reassurance during our freezing dirty-snow urban winter.  Mom separated out the edge pieces and starting making matches.  I managed to frame the border during a Father Dowling mystery episode (which I handle so much better than NCIS for the 1990s absence of violence and gore).  During a dinner of creamy chicken vegetable soup, Dad obsessed about the bitter cold and how during their first winter here 24 years ago a pipe burst in the basement for lack of insulation (the contractor’s helper had run out of insulation and had left the pipe exposed and the contractor now had to come back and fix the pipe and fix the ceiling and fix the wall, plus add the insulation that would have prevented the whole disaster) and how this year he did not have the strength to wrap the house hose bibs like he has done every year before and how they were exposed and how he hoped they would not freeze and crack and he wondered how far into the house zero degrees could penetrate and could zero degrees reach the basement pipes and burst them again?  Seeing no point in discussing the matter, I dressed in a heavy coat, strapped on a headlamp, and left the house armed with a stack of thick rags, plastic shopping bags, and neon-green duct tape, trapsing through deep snow to wrap the faucets—we all hoped this precaution would be sufficient, noting that the faucets were already anti-freeze hose bibs.  “You have set my troubled mind at ease,” Dad smiled thankfully.  Needing to rise at six the next morning, I said good-night at ten and bent to bed.  But I often wake at 12:30 in the morning to the sounds of Dad’s effort to transfer from the stair lift to the wheelchair, and Mom’s efforts, in her long cotton nightgown, to push the chair to the bed, Dad helping what little he can, and their talking, and sometimes their bickering over him issuing instructions she was already following.  I can tell from the tone if my help is needed, when I throw on my bathrobe and respond.  So long as he maintains his night-owl lifestyle (granted, he no longer reads until three in the morning), I cannot be the one to help him get to bed.  A routine of caregiving until 1:00 a.m. then rising at 6:00 a.m. daily would destroy me, probably in only two days’ time.  Thankfully, the CNA assists Dad in the mornings after I have left for work.  She knows to use the wheelchair to get Dad from the bed to the shower, to use the heavy-duty seated-walker to get him dried off and to the couch for dressing and to the stair lift to descend for breakfast and a day’s reading.  That is what he can do: read and read and read.  And too quickly the time comes to prepare another dinner worthy of them and the legacy they leave, perhaps lemon chicken on a bed of pesto couscous, or Hawaiian chicken on a couch of coconut rice (my favorite), or stewed spicy chicken and dirty rice, or, on occasion, beef franks sliced into canned pork and beans.  The puzzle beckons after dinner is cleaned up.  I stare at 500 unconnected pieces, feeling totally intimidated, knowing I can never find two matching pieces in that chaotic morass of 500, then somehow forming the border and slowly fitting together the interior, until the puzzle is done, and I am astonished and wondering how it happened.  So many pieces.  So many moving pieces.

Courage at Twilight: Transference

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We have experienced another week of steady decline in Dad’s mobility.  He has suffered increased weakness.  I have suffered increased worry.  He cannot walk.  Life is very different when you have walked for 86 years and suddenly find yourself paralyzed and immobile.  The word of the day is “transfer,” by which I mean the experience and process and effort of shifting one’s bulk from one seat surface to another, like from and wheelchair to a toilet, or from a shower chair to a walker chair, in which one moves laterally rather than vertically, and does not ambulate.  I sat down across from Dad to suggest the time had come to focus on transferring rather than walking.  “I think we should refocus our approach,” I explained.  He nodded in sad reconciliation, feeling humiliated and small.  How could I reassure him?  In truth, with the power wheelchair, he can enjoy greater independence and freedom of movement than with trying to walk.  But transference is a skill to be practiced—it is not an easy exercise, and I invite you to pretend your legs do not work and try transferring from one chair to another with only the strength of your arms and the span of your bottom.  Now add arms to those chairs.  To help him transfer from off his sofa to his wheelchair, I installed risers under the sofa feet, raising the couch five inches, and screwed three inches of lumber to the legs of his recliners.  Struggling with this new necessary skill, his transfers can be, shall we say, inaccurate, like onto the arm of a chair instead of into the seat of that chair.  Some transfers are violent, like when he fell from his wheelchair onto his couch so roughly that he knocked the couch of its risers and was lucky not to capsize altogether.  Since the escapade did not end tragically, I can comment after-the-fact on how I wish I had seen it happen and how funny it must have seemed.  A hair’s breadth of fate or providence separates tragedy from comedy.  Dad pronounces all his mishaps as comical, veritable jokes, although he curses more than he laughs when in the midst of transference.  Mom pounced on me when I came home from work, before removing my coat and tie, asking me to re-elevate the couch.  Then she showed me the toilet plunger sitting in the kitchen sink, and explained how the food disposal had plugged up with old spaghetti, and she could not clear the clog, try as she might.  Putting my height and weight into the plunger, I compelled the dirty water and ground up food through the pipes and successfully drained the sink and emptied the disposal.  She is always so grateful when I fix things she can no longer manage.  The next problem to solve involved her pharmacy of 24 years.  She and Dad had received letters informing them that their pharmacy was no longer in their insurance network, and in only two weeks they would have to pay full retail price for their medicines.  I offered to help switch to a new pharmacy, and envisioned the hassle and weariness of assembling all the prescription bottles and insurance cards and driving to the new pharmacy to see the staff and taking an hour to input the data into the new system, and the weather was very cold, and the streets icy, and the sky darkening at 4:30 p.m., and I really did not want to leave the house on this cumbersome errand.  Instead, I called the store, they took our information, and promised to get their information transferred from the old pharmacy to the new.  Mom beamed, amazed at my miracle working with the sink and the pharmacy.  I will try to elicit the same response with tonight’s dinner.  It is time to shift from writing to cooking.

(Pictured above: Italian pesto pasta and chicken with brazed asparagus.)

Courage at Twilight: A Grimless Reaper

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December 17.   Twelve degrees Fahrenheit.  I am hiking to Bell Canyon Falls.  But I am not alone this time.  My son John read about my December 4th loneliness and invited me to hike with him today.  Dad slept still when we left, but Mom asked his questions for him, about whether we had water, food, good boots, warm gloves, our hiking poles.  We pushed past where I had turned around two weeks before, pushed up to where the slow lay three feet deep beside the trampled trail.  We talked about life and love, relationships and challenges, joys and dreams, and I rejoiced quietly in his conversation and his character.  Cold in my bed two nights before, I had dreamt of death, a peaceful dream in which the presence of Death descended gently to touch those whose time had come to return—a soft, benign touch, not threatening, but caring and compassionate, possessing a perspective large as a universe about our journey through an eternity of time in an infinity of space.  Still, when I awoke in the dark, I felt compelled to check on Mom and Dad, to see if the dream had been prophetic or merely a macabre play on my anxieties.  As I stood in their bedroom doorway, the nightlight on the wall behind me cast an enormous human shadow on the wall before me, and I thought of the grim reaper, only I was grimless, and guileless, and I was not a messenger or a harbinger, but a steward and a servant and a son.  Dad snored calmly, and Mom’s sleep had sunk beneath his snores.  Throughout the week, groups of neighbors and church members had stopped by to wish Mom and Dad a merry Christmas.  A group of six young women and their adult advisors came to carol.  Dad had wanted to greet them in the formal living room, but he could not walk that far—he may never walk that far again.  So he smiled and joined in the singing from where he was, holding the large gift basket in which lay a loaf of cranberry walnut bread, wool-blend socks (even a pair for me), and mint truffle hot cocoa mix.  A bunch of boys with their adult advisors came to deliver a puzzle and oranges and blonde brownies and Andes mints.  Couples delivered a pineapple, whole wheat bread, peach freezer jam, a poinsettia, ornaments for the tree, and green bananas (because Mom told them Dad likes green bananas, not the brown blotchy sweet ones she enjoys), each gift an expression of love and regard and caring.  This is what I thought about as I slipped and rolled clumsily but harmlessly down the steep snowy mountainside, snow sticking to every inch of me, still with no spikes on my boots, still in the mountain’s cold shadow, my knees complaining loudly, the moisture from John’s breath frozen stiff on the whiskers of his mustache, my water bottle frozen in my coat pocket.  And then sunlight struck the tops of the snow-laden trees and worked its way warmly down to the snow-covered sagebrush and the deep snow drifts and the path and two hiking men with their poles swinging in easy rhythm.

Young ladies caroling to Mom and Dad.

John posing before the frozen Bell Canyon Falls.

Courage at Twilight: Will You Stand By Me?

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I am the shy quiet guy that lives with his parents, almost 60 years old, who they see pushing Dad’s wheelchair very slowly, so Mom can keep up, down the aisle to the front church pew, where a space is reserved for a wheelchair, where Dad has a better chance of hearing the worship meeting speakers, in the front where our family has sat in church for decades: in the front, where Dad, sitting on the stand those many years, presiding and exhorting and teaching, could keep an eye on his six children, not that we caused any trouble, and where he could be as close as possible to his family while carrying out his lay clergy duties. I am slowly learning their names, making a few acquaintanceships crawling toward friendship.  But today Dad was too weak to attend church meetings, and I had my granddaughter Lila with me, and we walked hand in hand down the aisle where Mom sat alone on the front church pew, and I could feel the eyes on me, friendly and interested and astonished eyes, and could hear their thoughts: Oh, he has a story!  And they wondered what my story could be as they saw my oldest son and his good wife and the little black-haired baby, my newest grandchild, and Lila my three-year-old friend, all sitting together in the front.  I share my desserts with church families now and then, always friendly cheerful encounters after which, as I am walking away, I hear them thinking to themselves: I wonder what his story is?  And they wonder if mine is a strange tragic story, as they munch tentatively, at first, and then with gusto, on my latest baking attempts, tonight’s being an enriched German holiday “Stollen” bread filled with dried fruits and sweet almond paste.  I baked the Stollen after cleaning up our Sunday dinner dishes, when I wanted to get off my aching feet but wanted more to make something pretty and interesting and sweet.  Dad asked if he could have a slice, which of course I gave him, in spite of the spiteful diabetes that is wrecking him, because he will be 87 in two weeks, and it was a thin slice after all, and let him live a little for heaven’s sake, and I said “no” to his importuning for seconds.  And he asked me, “Rog, will you stand by me while I try to stand up?” but I heard, Rog, will you stand by me as I am wasting away, in my pains, as I am dying?  Will you stand by me to the end?  Yes, Dad, I am here, and am not going anywhere.

(Pictured above and below: my first attempt at Stollen, an 18-inch loaf–delicious.)

Courage at Twilight: Diabetic Amyotrophy

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Dad’s eyes followed me as I moved about the kitchen preparing my breakfast. “Let me know what you think of those gluten-free no-sugar keto cereals,” he commented as I rummaged through cereals bought for him that he will not eat.  You could try them yourself.  “Not blackberry jam!” he gibed when I took the bottle out of the refrigerator.  “Are you putting blackberry jam in your peanut butter granola?”  No, Dad, I’m having toast with jam.  “And is that cream cheese?”  Yes, Dad, I like it with toast and jam—reminds me of Portugal.  “You’re putting milk on your cereal, right?”  Oh, my, gosh, Dad—stop commenting on my food!  I can feel his eyes on my every movement, and I want to scream.  But they are benign, innocent, aged eyes.  Why does the inoffensive become so irksome in people we love so much?  After breakfast would come the drive to the hospital for the NCV and EMG tests.  “You brushed the snow from the Suburban, right.”  Of course, Dad.  And I shoveled the driveway.  And the Terry’s driveway—he has been looking feeble lately—and Melissa’s driveway.  I had enjoyed marching the snow blower through four inches of new powder; it sparkled in the sun at it flew.  Clearing our own driveway was anticlimactic, so I moved to the neighbors.  I hoped they would now know it was me—I enjoyed thinking of their surprise and gratitude.  And, being anonymous, I would not have to face my clumsiness at being thanked and smiling and saying you’re welcome and other social engagement awkwardness.  I have noticed my happiness is greatest when contributing to the happiness of others.  There is joy in service.  So why do I spend so much solitary energy unsuccessfully pursuing my own happiness?  There really is something to that business of finding your life by losing it.  At the hospital, the doctor performed two tests.  First, nerve conduction velocity: he hooked up small electrodes above key nerves and administered numerous not-unpainful electric shocks to measure nerve conduction in Dad’s legs and arms.  Second, electromyography: he inserted a needle in key places to “listen to the muscles” as Dad flexed them in various instructed ways.  Dr. Hunter focused on his work as I focused on Dad’s grimacing face and jumping limbs and spots of blood dripping.  The testing shows you have severe neuropathy in both legs; severe nerve damage.  We now, finally, have a diagnosis.  Diabetic amyotrophy: rare condition…severe burning leg pain …weakness and wasting of the muscles.  Experienced by older patients with moderate controlled diabetes.  No cure; no treatment.  The pain may subside, but the weakness will remain: your strength and mobility will not return.  I am sorry.  “Well…that’s life…I’m 87 in two weeks…my body is falling apart…that’s what happens.”  I retrieved the wheelchair from the back of the faithful Suburban, helped Dad slide from the front seat into the chair, pushed him through the melting ice and up the slick salt-covered ramps and through the front door to his recliner, the salt crunching under the wheels against the cold white tile.

(Pictured above; our after-hospital dinner of lemon chicken on a bed of pesto couscous with white bean and corn salsa.)

Courage at Twilight: Bittersweet Good-byes

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“I’m not doing my arm exercises today,” Dad announced with some belligerence. I had heard the CNA coughing and sniffling continuously as she helped him bathe and dress.  How ironic, and alarming, for a health care provider to bring sickness into our home.  Dad was none too pleased, and invited her to leave an hour early.  He asked me for the physical therapy supervisor’s name (we’ll say “PT”) and phone number: “I’m going to call PT and tell him not to come back.”  Dad could not walk, could barely move, the day after PT poked and pushed and stretched him, yet a new depth of debilitation.  He made the call and left a message.  He did not confront either the CNA or PT, instead just removing himself from the threats.  For days now, there has been no question of walking to the bathroom at night: the bedside commode has to do, and it is all he can manage to transfer from the mattress to the commode three fee distant.  Today he could lift neither foot over the four-inch lip of the step-in shower stall.  On a happier note, I installed the old steel banister, removed with the stair lift installation, in the basement stairwell, making trips to the cold storage room and the freezer much easier for Mom: a “piece of cake.”  This morning I brought up frozen chicken breasts to thaw.  Hyrum came over for dinner—his last, for a while, with Mom and Dad—and I transformed the raw bird into tangy Hawaiian chicken on a coconut rice bed.  Hyrum, at age 20, is leaving for Brazil to begin his volunteer missionary service, as I did in Portugal in 1983, and as Dad did in Brazil in 1956, for The Church of Jesus Christ of Latter-day Saints.  Two years he will be gone, and I will miss him.  He is my son and my friend.  Dad told him the old stories about eating avocados the size of grapefruits for lunch and being arrested at the behest of local clergy and inviting hard men to lead their families in kneeling prayer and about feeling the love of God for the people.  Hyrum said his farewells, promising to send Mom and Dad his weekly email updates.  “I may not be alive when you get back, Hyrum,” Dad mused, “but I’ll be happy to read your emails while I’m still alive.”  Hyrum and I were both poignantly aware of the real possibility of Dad’s passing before Hyrum’s homecoming, making sweeter and sadder this good-bye from a grandfather to a grandson.

(Pictured above: Hyrum with Dad and Mom.)

The basement stairs, before and after installing the steel banister, left.

Courage at Twilight: Phases I Never Knew

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Every day, it seems, Dad laments, “This is my worst day yet, Rog.” Every waking walking breath is an audible grunt or groan—no normal breathing in this house.  He fights for life with all his energy and might, both of which are diminishing—he knows it, and he is disheartened.  And so am I.  In my 14 months living here, I have seen Dad progress through late-life stages I did not know existed, from the two-foot-shuffle to the hand surf, from the hand surf to the clickety cane, from the clickety cane to the walker, from the walker to the so-slow stair lift, from the stair lift to the wheelchair, pushed, then self-propelled.  The recliner is an ever-greater presence in each successive phase.  So is the pain.  My worst day yet.  What am I supposed to do with that statement, that fact?  How am I to hold and examine and process that reality?  Why, of course, I am to be a fathomless fount of patience and love, of smiles and good humor.  And, of course, I am not.  I am a shallow pond of brine, with fresh water trickling in here and there.  His reality creates mine, and I find myself more irritable and impatient, symptoms, perhaps, of feeling powerless, and empty, and tired, and stuck.  I began this experience as a consecration, a mission of providential origin, I thought, and still think.  But a mission’s initial glamor always attenuates and turns into a long hard slog.  One’s initial intentions, however sincere, begin to quiver and equivocate.  Only then can I see, do I know, the kind of missionary I am.  No saint, to be sure.  No hero, certainly.  Just a laborer who shows up day after day, whose contentment is not to be found in his perquisites but in the solitary knowledge he is doing what must be done.  That alone is ennobling, I suppose.  And will this mission, this story, have a happy ending?  As with all true stories, the answer is both yes and no—both the joy and the sorrow.  How I feel when the story ends will be my choice.  Before it ends, however, I can choose to listen with a smile, to cook and clean with good cheer, to do the honey-dos with zest instead of a sigh and a roll of the eye.  Time to stop writing.  Time to get to work.

(Pictured above: the javelina guards the varnished ramp, slippery from last night’s snow.)

Courage at Twilight: Dirty Rice

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I informed Mom and Dad I was cooking southwest wraps for dinner: ground turkey, black beans, corn, and rice rolled in tortillas and crisped in an iron skillet.  He looked at me funny and asked, “Rats for dinner?”  “Wraps,” I reassured him.  Earlier in the day he had cut himself.  He had reached through the bathroom doorway for his walker handles, and the door’s strike plate had sliced the paper skin of his forearm.  The CNA wiped the floor clean with baby wipes, and bandaged his arm.  He sat at the kitchen table telling me about it.  My daughter Laura has sent me her ten favorite recipes—all winners—and I have made two or three each week to spice up Mom’s and Dad’s dinner time.  Tonight, we gobbled up Cajun chicken with dirty rice, which I learned is rice cooked in the fats and juices and spices from cooking the sausage and chicken pieces.  Dad praised the meal no fewer than six times before we finished eating.  I relish the experience of making beautiful and delicious dishes which people enjoy.  As we ate, Dad told me the results of his Mayo Clinic spinal fluid test.  The nurse had called to inform him that his spinal fluid is “completely normal.”  Completely normal.  “My spinal fluid is completely normal,” he sounded discouraged.  “But I am getting worse by the day.”  Once again, the good news was hard to take.  No diagnosis equals no treatment.  Here was one more possibility explored.  Here was one more hope disappointed.  Here was yet another beginning of searching for elusive answers while suffering unanswerable pain and weakness and while fighting for his life and for his quality of life.  I am powerless.  All I can do is cook dirty rice.  James the physical therapist stopped by after dinner to evaluate the effectiveness of therapy.  He asked Dad all the same questions everyone else has asked.  He poked and prodded and asked “Does that hurt?” a dozen times.  Yes, it hurts.  A lot.  After ten minutes, James had figured out what dozens of doctors and nurses and tests and therapists had not figured out.  The spinal nerves are inflamed, causing him pain, due to his age and his recliner sedentariness and his stooping over and due to his spinal joints not being moved and not circulating blood to the nerves which therefore are inflamed and causing him pain.  Simple.  Just do these exercises.  And don’t sit: sitting kills your nerves.  I am skeptical of any one person who has all the answers, and that quickly.  But, could he be onto something?  I will try to help Dad to the exercises.  Meanwhile, he is too tired and weak to anything but sit in his recliner and kill his nerves.  He invited me to turn on the Christmas lights wrapped around the bushes, and asked if they had come on despite the snow.  Yep, I answered, for I had wrapped every joint and plug with black electrical tape to keep out the water, as I did last year, and the year before.

Courage at Twilight: Getting Ready

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For a second time, United Health Care served a termination notice, ending Dad’s care the next day. Sarah scrambled to assemble her second appeal, bolstered by Dad’s nurse and physical therapist who averred he “would benefit from continued skilled therapy to maximize patient’s independence at home and reduce rehospitalization risk.”  And for the second time the appeal was granted only after Dad was to have been expelled.  But we only need two more days, and then he will be coming home.  Not to his own bed, sadly, but to a hospital bed on the main floor, in the office and library we transformed into a bedroom, still finding room for a computer—Mom’s wedding portrait sits framed on the desk these 60 years later—and a shelf full of his favorite books, with paintings of Jesus on the walls.  The bed will come in two days, and I will assemble the commode tomorrow.  In the meantime, Dad has worked hard pushing the walker down the hall and climbing up and down two railed stairs, after which he is exhausted for hours.  Still, he makes incremental progress every day.  With new hope, lost for a time, he has been hinting stubbornly that he anticipates settling back into his old-friend habits of reading late into the night and climbing the stairs alone at 3:00 a.m. to fall into bed, and arising at 10:00 a.m. to shower and dress and to brave the stairs and eat breakfast at noon.  And my mind shudders from the memories of pulling him up the stairs with a belt and lifting him off the toilet and hoisting him into bed, repeatedly, and his trembling and groaning and collapsing under me, and the thought of continuing fills me with dread and frustration and my own trembling, and I want to scream that I’m not doing this anymore!!! In my mind I have been rehearsing speeches to him about how his unhealthy night-owl habits not only weaken him but frighten and exhaust Mom and me, and how the thought of picking up where we left off the day of the ambulance ride, as if that ride had never happened, and thinking absurdly that I’m all better now when he almost died and he still barely can move and each step alone on the stairs is a tooth-clenching death dare.  The extent of Dad’s recovery is remarkable; I had felt the reaper breathing foully on me from too close.  Still, the thought of Dad’s homecoming has brought me no joy, only stress and anxiety and the phantom smell of raw onions, and visions of mayonnaise smeared on the kitchen counter, and the awful wait as Dad somehow pulls himself slowly up 16 stairs at 3:00 in the morning when I should be sleeping soundly but cannot for knowing how impossibly difficult each stair is to step up, and how easily he could misstep and tumble to the landing in a crumpled pile, mooting in three seconds the so-long month of pains and efforts, setbacks and struggles, fears and tearful longings, and the small but hard-won victories during four weeks of hospitalization and convalescence—all that for nothing, all that for the pride of doing it my way.

(Pictured above, Dad’s office-turned-bedroom awaiting his hospital bed, and him.)

Courage at Twilight: So Many Cards

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Cards have begun to pour in from the Church primary children, and from some of the men and women of the neighborhood, and from family members, and former missionaries, all with sincere and adorable and tender messages to Dad, including great-grandchild scribbles. We taped all the cards to Dad’s rehab room wall, where he must see them every day, to remind him that many people love him and hope for his healing and return home.

You Are the Best! 

Never Give Up! 

I want to play Legos at your house. 

Hurry up and get better.  We miss you at church!

I love you so much!

I hope you get well soon!

Please know you’re in our prayers and thoughts.

Your awesome!

I think about you every day!

I like to play outside and look for pinecones in your backyard. 

I hope you get better soon.

Hoping and praying for you every day.

Feel beder.

You are the goodest Baker in the world.

You’re cool!

We love you.

You can do this.  Never give up.

I love you Grandpa.

Courage at Twilight: Simple Gifts

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Vases of aromatic garden flowers.  A gallon of two-percent milk.  Enormous sweet grapes on a plate.  Crayon-colored cards for dear Brother Baker from Church primary children who don’t know who he is but still care.  Burger King Whopper and fries: Mom’s favorite.  Rides to the hospital from women who know the way well—a beloved son with bacterial meningitis; a husband who fell from a second-story ladder; an amputation gone wrong—and visiting along the way.  Baked chicken salad wrapped in puff pastry.  Soups and a salad.  Giant chocolate chip muffins.  A man on a bicycle checks my sprinkler leak, and will get back to me.  Chocolate-caramel brownies—oh my.  Our names prayed over in temples across the world.  Smiles, and waves, and inquiries: How’s Nelson?  Well-wishes.  A quiet house.  Love, and hope for tomorrow.

Courage at Twilight: Visiting Hours

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Visiting hours are 9 to 9, which seems quite generous. The other rule, however, is not.  Only two visitors at a time.    Despite the three-person couch and other chairs and the spacious room.  So, my saintly 83-year-old mother, who has gone to the hospital for eight days straight, must leave her sick husband’s side for two neighbors, or two siblings, or two children, or two grandchildren to visit.  Or Mom stays in the room and only one other visitor is permitted.  I had seen the rule on signs in the elevator, nursing station, and the patient room doors.  But since none of the staff had troubled us over three visitors, or four, for five consecutive days, and since we are quiet, peaceful, clean, and helpful people, I thought perhaps the hospital did not mind so much.  Not so.  On day six Big Meanie nurse instructed all but two family members to leave.  It’s IMC’s rule.  I did not argue or accuse or abuse, but I did inquire, in an effort to understand, and to explore flexibility.  Did it make a difference that I am Dad’s attorney in fact and have his advanced directive in my briefcase?  I’m sorry, but no.  Did it change things if I am the authorized physician contact for when the doctors stop by to explain their diagnostic and treatment efforts?  No.  What about the fact that we are all Covid-19 vaccinated and boosted?  No.  Did it make a difference if immediate family were gathered bedside to perform my Church’s religious ceremony of invoking the power of faith and pronouncing a blessing of health and healing on the sick?  No, and that isn’t the case here anyway.  Well, it was the case when Dad’s three siblings and their spouses, and my brother and sister and me, gathered around him to give him such a blessing.  A beautiful thing for loving, spiritual family to do, perhaps the last opportunity to do such a thing for Dad, to offer this expression of faith and hope and love, and perhaps of good-bye.  Did you know that we have been very helpful to the nursing and therapy staff, adjusting the bed angle and height, feeding Dad, sponging him off, helping slide him head-ward when he had slipped down the sloping mattress, brushing his teeth, shaving his chin, helping him stand, pivot, transfer, use the toilet, take a seated shower, stand, pivot, transfer back to the bed?  For all her strength and grace and experience, Heather could not have done it all without us, and thanked us for our contribution and learned expertise.  So, I left Dad’s room and walked down the hall to sit uselessly on a cracked and stained sofa, where I could not help or comfort or observe.  I felt angry at the rule, and thought it inhumane—a bureaucratic pronouncement out of context.  (I learned later that the two-visitor limitation was not IMC policy, which was, instead: Maximum number of visitors at the bedside is determined at the discretion of the care team.  Discretion was allowed, after all.)  I felt angry at Big Meanie nurse who enforced the rule so militantly.  And after two days she went off shift and the familiar smiling nursing staff welcomed us all back to be helpful and complimentary and appreciative.  To be present.  For our father.  For each other.

 

(Photo from intermountainhealthcare.org, use pursuant to the fair use doctrine.)

Courage at Twilight: Being Useful

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I made the mistake of characterizing Steven’s help as heroic.  With a look of alarm, he disclaimed any hint of heroism.  Even before his reaction, I realized that “heroic” was not the right word.  “You’re a hero” is a lazy cliché, and I should have made an effort to find more accurate words.  He supplied them for me: “I was just glad to have been useful.”  I had watched him use his own feet to move Dad’s feet up the stairs and across the room to the bathroom or bed.  I had watched him help Dad shower in the hospital, passing dallops of soap to Dad’s own hands, and washing Dad’s inaccessible extremities.  Nurse Chloe had gently adhered special heel bandages because Dad’s heels pressing into the mattress, hour upon hour, day after day, had begun to blister his skin, and we worried the tissue would die from insufficient circulation.  And she had wrapped his feet and ankles in foot-shaped pillows to further reduce diabetic risk.  And my brother had used sanitary wipes to scrub Dad’s soiled shoes clean and white and like new.  He certainly had been useful, indispensable even.  And that is what sons and daughters ought to be in their parents’ old age: not heroes, but servants.  Useful.  Doing what needs to be done.  Meaning well while acting in all their weakness.  And they were.  And I naturally thought of another servant who washed out the stains and washed the feet and set the example for us all.  Steven flew home today, a home far away—and when people tell me I’m heroic, now, I demur, and reply that I am just glad to have been useful.

Photo above: a fresh bouquet today for Mom from a neighbor Church member.

Courage at Twilight: So Many Questions

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Is this the end?  Will he get better?  What help do I ask for?  What help do I accept?  How do we get him to the bathroom, up the stairs, into bed?  Do we carry him down the stairs and to the car and drive him to the hospital, or do we call 911 because we cannot safely manage?  Did you bring his hearing aids?  What brought you to the emergency room today?  Is a lumbar puncture more dangerous than a spinal tap (or are they the same thing)?  What is the difference between meningitis and encephalitis?  Will he ever come home?  What do I tell the family?  And what do I not tell?  Is the occupational therapist single?  Why won’t he eat?  How do I manage multiple group texts, frequent updates wanted?  Why am I binging on onion rings and chocolate ice cream?  Why am I so tired?  Why am I so tense?  Why do I want to vomit?  Will I get through this?  How am I going to get through this?  What will I do when my brother goes home?  What are the visiting hours?  Who will take care of Mom when I’m at work?  Will you pray for him, please?  Do you want to watch TV?  A movie?  High Road to China or White Nights or Nacho Libre or The Scarlet Pimpernel?  Do you have a Galaxy S9 charging cord?  How are his blood glucose levels?  I wish I could retire.  What are their insurance co-pays, deductibles, and out-of-pocket maximums?  How can I get all my work done?  Will the mayor fire me?  Why do my colleagues keep sending me work when they know where I am?  Did the nurse sponge his back and give him his insulin shot?  Why is his knee pain so intense?  Why is the knee fluid brown?  Why won’t he take the narcotic?  Why won’t he swallow?  Can he swallow?  What do I do if he chokes on his food?  Who brought the pretty flowers, the red and white carnations wrapped in baby’s breath?  Do you have any questions, sir?  Will I know when it’s time to gather the family?  Did you bring his hearing aid batteries?  What did you have for lunch?  Where did we leave off with James Herriot?  Wasn’t that a lovely story?  How were your onion rings, Mom?  Does he have an advanced directive?  What is your name and what day is it and where are you right now and who is the president of the United States?  Do you consent to the procedure on Mr. Baker’s behalf?  How are you feeling tonight, Dad?  Can I raise your bed or rearrange your pillows or bring you another blanket?  Can I help you brush your teeth?  Can you see the mountains from your window?  How can I know the truth about anything?  What will fill the emptiness?  Are you with me, God?

(Photo from Intermountain Health Care used pursuant to the fair use doctrine.)

Courage at Twilight: The House Is Oddly Quiet

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Imagine being strapped to another’s body and operating it from behind, climbing the stairs, lifting the body’s leg with yours to climb one step, then the other leg and another step, and more steps, the body sinking heavily into yours, a big body, a body too weak to move without help.  That is how my brother managed to convey Dad upstairs to bed.  We consulted, and we realized Dad needed hospital help, and we realized we could not safely convey him down the stairs and into his wheelchair and into the car, and we called for an ambulance.  Such sudden profound weakness: Dad could not move.  “I don’t understand it,” he bemoaned.  “I could do this two days ago.  Now I am so totally and absolutely weak and wasted.”  We had taken Mom and Dad to the Temple Quarry Trail in their wheelchairs.  Dad had not wanted to go—he felt too tired.  But we insisted he come, for his face to soak in some sun, for the fresh air to move around him and fill his lungs, to see the green of wild cherry and mountain maple and gambel oak—Mom brought home a pretty hatted acorn—and boxelder trees, to hear the river spilling noisily over quartz monzonite boulders.  To see Gabe gazelling down the trail with a four-year-old’s ebullient life dance.  But then the stairs, and the ambulance, and the utterly profound weakness.  “Common infections can present with profound weakness and disorientation in older patients,” the doctor explained.  Dad is now too weak to talk, too weak to chew his turkey cream cheese cranberry sandwich which sits drying on a plate, too weak to reach for his diet coke, staring through the 8th floor window at his beloved Wasatch mountains towering over the valley.  A last look before leaving his room for the evening: Dad is sleeping exhaustedly, his face glowing with diffuse light from the lamp above his bed, and he seems to lightly inhabit two worlds at once.  We are keeping up our spirits up at home, Mom and siblings and me.  We have experienced precarious near-collapses and kind ambulance EMTs and the ever-dragging emergency room and tests and scans and the making of plans one hour at a time.  We are weary.  And something feels different in the house.  Dad’s floor lamps do not burn until 3:00 a.m. with his reading.  His New Balance shoes sit empty by his chair.  Mom looks over the railing in the middle of night, like she does every night, to check on her beloved, to see him sleeping or reading and happy, but the chair is empty and dark.  The house seems oddly quiet, with someone missing.  And we pray for him to come home.

The Gambel Oak acorn Mom brought home from the Temple Quarry Trail.

Courage at Twilight: Banana Pancakes

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“Could this really be the end?” Dad wondered aloud to me.  He could not even pivot on his feet to point-and-fall into his chair, and his legs trembled on the verge of collapse.  His sudden decline accompanied his cold—he tested negative twice for Covid antigens.  Yesterday was Wednesday, my long City-Council-meeting work day, and when I walked through the door at 10:30 p.m., Mom sighed with a drawn look, “I’m glad you’re home.  Your dad had quite an adventure today!”  Dad’s adventure was not watching hummingbirds on his back patio with Lone Mountain in the background, but a runaway walker crashing into the fireplace brickwork and Mom calling neighbor Brad to pick Dad up off the floor, which took several attempts.  He could not rise from his newly-elevated recliner, even as I strapped the new sling around his torso and pulled hard on the handles.  He could not walk to the stairs, but sat is his walker shuffling his feet as I nudged him forward.  He could not, of course, ascend the stairs, and his arms and legs trembled and shook as I pulled up on the sling with all my strength on each step.  (The quote for the stair lift was $14,000, which means we will not be purchasing the stair lift.)  He could not get into bed until I lugged his legs up and in.  He could not cross the bathroom after his shower this morning, when I wrapped him in a towel, turned him, and pointed him in a controlled fall onto the walker seat.  Mom murmured “I can’t do this” several times, foreseeing what she would face when I was at work, and she is right: she cannot do it.  I listened all night for panting groans and shuffling feet, and darted to his room at 5:00 a.m. when he was part way back to bed, about to collapse, and I grabbed him and dropped him on the mattress and hoisted his heavy lame legs into bed.  So, is this really the end?  I do not think so.  But the end grows forebodingly closer, and I feel like I am staring down the long dark rifle barrel of inevitable imminence.  While Mom helped him dress, I cooked up my daughter Laura’s “Foolproof Pancakes” with a twist of mashed baby red bananas and half whole wheat—and with bacon on the side, because why not?  And Dad enjoyed his banana pancakes and bacon.  And Mom enjoyed her banana pancakes and bacon.   Me, too.

The Sling.

Courage at Twilight: Red Ink

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When Harvey turned 80, I gave him an antique workman’s lunch box, with oil rubbed into the rust—he adores antiques, and has a knack for turning junk into treasure. In the lunch box I included a homemade card with flower petals and leaves, and on the cardstock insert I wrote in my best longhand a celebratory message to my dear friend, Harvey, the hero of Rabbit Lane: Memoir of a Country Road and a one-time tanner and rendezvous mountain man who wears quietly the name Many Feathers bestowed by Goshute and Navajo chiefs.  A therapist once told me that emotional writing should be done longhand, accessing distinct brain quadrants than when typing, so I write in careful cursive my personal messages and in my journal.  In solidarity with my son, Brian, I purchased from Noodlers Inc. a whorled resin fountain pen named Ahab for its whale-shaped clip, and filled its cartridge with a blend of ink called Black Australian Rose.  But the mix was off in my ink batch, more of a cherry red than a red-and-black.  But I had bought it, so I was going to use it, and began signing official city documents in bright red ink.  “Signed in blood,” I joked rather lamely, a tad embarrassed for the bright resemblance.  The ink even bled through the cheap copy paper.  I thought to darken the red with a few drops of Moon Dust, and now the ink really does look like fresh blood instead of cherry juice, though I am enjoying signing in blood.  My message to Harvey in his 85th birthday card was written in this ink-blood.  When I came home from work on his birthday, I found a box from him on my desk.  Before opening it, Mom wanted to show me the five new grab bars in the bathrooms, the most important of which was just inside the master shower door, there anchored securely now to help Dad step over the deep tiled lip of the shower.  He acknowledged that shower ingress and egress had been precarious with him grasping the soap dish for lack of a bar.  Now the simple act of showering will be far safer and more enjoyable.  And with a doctor’s order we paid no sales tax.  Mom was happy with the installer, Austin, who was so careful and thorough and kind, and upon inspection I, too, was satisfied.  Retrieving Harvey’s box—how characteristic of the diminutive man to send me a gift on his birthday—I found inside his antique lunch box, for he had moved out after losing his third wife, and had no room for antiques in the bedroom of his daughter’s house, and did not how long he would be around anyway, and knew I would appreciate it more than anyone else in the world.

(Pictured above: Harvey on his 80th birthday with the antique lunch box.)

The antique lunch box.

 

My Ahab fountain pen resting on a pen bed made by Brian.  See Brian’s YouTube channel “Down the Breather Hole” for fun fountain pen photos and videos.

 

Black Australian Roses “blood” ink handwriting sample.

 

The new grab bars are in!

Courage at Twilight: Self-Care

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“So what does the caregiver do for self-care,” Kristine asked me, and I was stumped. All my possible answers sounded stupid.  Watch episodes of Disney’s Obi-Wan and Marvel’s What If.  Write posts for this platform.  Bake bread and cakes and cookies (and eating them).  Check Facebook and WordPress and Instagram and Gmail.  But her question is one that begged to be asked, and one I would do well to search carefully for answers.  I know I have several built-in barometers that warn me of high-pressure storm systems in the forecast, of high winds and flash floods and booming lightning and sinkholes.  The first is the profanity barometer.  Not that I am a profane or indecent person, and not that I cuss at people or the world or God.  Rather, I have discovered a direct correlation between by levels of emotional distress and my swearing under my breath at any little inconvenience, like dropping a paper clip at work or spilling on my favorite shirt.  The second is the compulsive eating barometer.  I doubt that one ever conquers hunger, but I have made real inroads: I lost 40 pounds through fasting, portion control, soda abstinence, and sweet avoidance.  I have discovered a direct correlation between levels of emotional distress and my compulsive eating, usually of chocolate covered almonds or Jordan almonds or lemon yogurt almost (what is it with almonds?)—but muffins and cookies and breads and other sweets will do in a pinch.  But sometimes fasting seems like a sugar-free marathon.  I feel disgusted with myself for such a lack of discipline and for having put back on ten of the old pounds.  Much of my distress comes from the perpetual pressures of caregiving, some from adding long work days to caregiving, some from adding a long commute to long work days.  And, no doubt, significant distress has come from having signed up for that dating app and corresponding with several women at once and the labor of making new friends and the terror of dating and that most exhausting of questions What next?  “So how does Roger care for Roger?” she asked.  Well, I am not sure, but I am writing this entry (does that count?), and I will arise at 6:00 a.m. to ride the stationary bike and read N.T. Wright’s Simply Jesus and leave for work without eating and listen to the birthing pains of the Civil Rights movement and respond to other people’s emergencies all day and drive home at rush hour and ask Mom and Dad about their day and cook another dinner and wash the dishes and search for hidden chocolate covered almonds and watch another episode of What If? and get to bed too late only to start it all over again tomorrow.  Whatever.  In any event, I feel too tired to worry about self-care tonight.

(Photo is of cherry chocolate chip bread baked yesterday.)

Courage at Twilight: Broken

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The dishwasher door springs both broke and the heavy door slammed down if not snapped securely shut, and with the anchor broken off the washer tipped forward and the dish-laden trays rolled out with a jarring clang. Brian helped me pull the machine out and install the new springs and pulley cords.  Tracy helped fashion homemade counter-anchors from common elbow brackets—and they worked!  On advice from the Bosch store, I had bought an expensive new dishwasher base, but was relieved to find the old base had a built-in slot for the new springs, and I was spared the chore of disassembling the washer and the exasperation of not being able to see in my mind how to reassemble the parts back into the whole (an annoying life-long intellectual weakness).  As it was, You Tube was indispensable, even to replace the springs.  I felt thrilled and relieved we had succeeded in fixing the dishwasher, and thanked my Lord the repair was simpler than anticipated.  I had not realized the stress and pressure I was putting on myself to get the machine fixed.  But then Brian found a pool of water under the kitchen sink, dripping from a filter cartridge seal, dripping down a hole into the cavity above the finished basement, and we could not find the filter wrench.  The bowl I placed under the filter filled overnight and spilled again into the dark void in the floor.  Following with my eyes the various colored hoses (blue, yellow, red, black, and white), I discerned how to turn off the water to the filter and close the bladder tank valve—and the drip stopped, just in time to leave for church.  Staggering with his cane, Dad wondered if today would be his last day walking to our habitual pew near the front.  “My legs just won’t work.  I’m getting worse.”  Post-polio sets in like a heavy dense discouraging fog that never blows or burns off but grows only heavier and denser and more oppressive, and one’s feet become increasingly thick and leaden and mired in an energy-sapping sink.  He made it to and from church, today, with help under each arm.  Terry asked me how Dad was doing, not needing my response to see the truth, and knowing my unspoken thoughts as he offered, “I have a good wheelchair.  I’ll dust it off and bring it over.”  I thanked him, and suggested I would come get it so I could sneak it into the house unseen.  Dad thinks he likely will skip the walker and go straight from the cane to the wheelchair.  After church and rice casserole and a nap, Mom showed me how the DVD player would not respond to the remote or to direct button pushing—it had swallowed the DVD and refused to give it back.  She pried the tray open with a serrated Cutco knife, and the tray stuck stubbornly out, appearing much like a dead animal with its tongue lolling.  Remembering the no-longer-used basement entertainment equipment, I brought up the old combination VCR/DVD player, made before HDMI technology, and plugged the red, white, and yellow audio/video cords into the TV.  With new batteries in the remote, the old machine came to life, functioning correctly and obeying Mom’s commanding button bushes.  She was so pleased she decided the moment was right for an episode of NCIS, which she learned was also a favorite of Gabe’s other great-grandparents, the Scotts.  The word “surprised” describes my reaction to having fixed three broken appliance problems in two days—generally I am not very handy.  I only wish I could fix the only real problem of these four: Dad’s crumbling legs and feet and disintegrating mobility.  The best I may be able to do is to push his chair down the aisle at church to sit near our customary pew, on the front row, where space was left for a wheelchair.

Courage at Twilight: Falling on Friday

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It is a Friday night, and I am home alone in my upstairs office, reading, and writing, and I am not out with friends and I am not being entertained by superheroes. Every hour upon the half, I roll out and fold over a butter and bread-dough laminate—24 layers—for tomorrow’s chocolate croissants, and between rolling I am reading the Selected Speeches and Writings of Abraham Lincoln.  I bought a copy for myself after reading another Lincoln biography, but Dad was so excited to dive into the book, and cannot read without a yellow highlighter (like I cannot read without a yellow highlighter) that I gave him my copy and bought a second for myself.  Already I have learned the words “vulpine” and “hagiography” and learned that Mr. Lincoln was not merely the stoic statue of still photographs, but faceted and furious and considerate and cutting and desperately sad and brutally patient, and witty, and he loved to tell stories, for stories will tell the truth faster and longer-lasting than the truth itself.  Dad told Lincoln stories at the dinner table, but he looked very tired; he had seemed tired all day.  When I first saw him this morning, and asked him “How are you today, Dad?” he responded with his characteristic “Marvelously well, thank you!”  But later he confessed to feeling “very poorly” and tired and weak.  When I finished my work day, he said he would go outside to blow the rock wall clean of pine needles and leaves and dirt.  And I began mixing my dough.  I kneaded and listened, tense, and soon heard a desperate bellowing from the back yard and rushed out the door to see Dad, on his hands and knees, sinking to splay on the concrete, shaking with vain exertions to move.  I managed to lift him back up onto his knees, and in a huge joint effort he inched up the arms of a patio chair high enough for me to kick another chair behind him, where he sat, trembling and pale.  “I fell,” he observed flatly.  Despite his state, he insisted on mounting the mower and cleaning up the grass.  Between bites of chicken and broccoli, he told us, “I think my legs just collapsed.”  Feeling traumatized, I blurted, “We need to have a conversation.  You cannot work in the yard if you are feeling weak and I’m not here.  If you fall when I’m not here, you’re not getting back up, and it will be an ambulance and a hospital and who knows what!”  Inside my head, I screamed, You’re not allowed to be stubborn!  To be stubborn is to die!  I had felt terror at finding him helpless on the patio concrete, at my not being strong enough to muscle his bulk off the ground, of his visible deterioration week to week, of knowing this is a one-way track with a finish line I don’t want to cross.  Seeing that my fury came from my fear, I could forgive myself and forgive him and calm myself into a nice family dinner.  It is a Friday night, and Dad is watching the Jazz game from his recliner, and I am reading and writing and rolling out my croissant dough, and after the rolls bake tomorrow, Dad and I will go outside together with rakes and shovels to do a little yardwork before dinner.

(Dad’s labors in the yard beneath his beloved mountains.)

Courage at Twilight: Getting the Socks Started

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Every day at noon, Dad’s breakfast hour, he calls “Lucille!” for her to help him start his socks.  He can no longer reach his toes to start pulling on his socks.  When Mom was away one day, he called for with, “Hey, Rogie, will you help me get my socks started?  You mom’s not here.”  I scrunched the left sock up and covered his toes.  “I can get it from there,” letting me do only what he absolutely could not do for himself.  Next the right foot.  I have offered to help at other times—chagrined, he responds that he wants Mom do help him.  I understand.

(Image by bernswaelz from Pixabay.)

Courage at Twilight: Almonds by the Pound

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I am not doing well.  Of course, that sentence is so vague as to mean nothing at all.  Let me see if I can rephrase.  I am feeling acute prolonged distress on account of continuous daily events like watching my father exert all his earthly energies merely to rise from a chair and stumble on the verge of forward falling with each step as he crosses a room and knowing that one fall with a blow to the head or a broken leg or hip would take him from his home and land him in a hospital or assisted living whence he might not return and knowing the finances and the absence of long-term care insurance and that the needs for the little that is left, the needs, the needs, come constantly and persistently and if Mom and Dad are long-term hurt or long-term sick and cannot stay home the bills would take their home from them for we likely would have to sell the home, the home, and then where would our family be? and I can’t even think or ask When will this end? because the only end is a sad and tragic end which I abhor and eschew and don’t ever want ever and so we endure together and we make the best of things which often is pretty excellent though always under pall.  I know I am not doing very well because I am writing in hysterical stream-of-consciousness and I swear frequently under my breath and I am consuming large quantities of lemon-yogurt-covered almonds and milk-chocolate-covered almonds and colorful crunchy Jordan almonds and feel a general awfulness inside and out and the frequent need to sit in a dark quiet room in my recliner under a soft fleece throw.

 

(Image by WikimediaImages from Pixabay.)

Courage at Twilight: Fig and Date Bread

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Burt Brothers called to tell us what the repair would cost. We had worried the cost would be higher.  When I poured the windshield wiper fluid in the reservoir the afternoon before, the fluid gushed out onto the driveway.  I struggled to remove the heavy battery so I could see the reservoir and its tubing, and found both tubes (to front and rear wipers) broken in the same place.  I left small pieces of my finger behind reinstalling the battery.  The service project the next morning had caught my eye on Facebook, on the page I follow about the Jordan River, where I kayak and cycle.  But the event appeared to not catch many other eyes, for only two volunteers came, plus the Jordan River Commission Executive Director, who dispensed gloves, trash bags, and garbage pincers.  Our goal was to bag all the garbage at the river-side park before the wind blew it into the river.  I have kayaked around huge floating masses of flotsam on the river, some growing their own vegetation.  The Director thanked me for coming, dispensed some tips about good kayak launches for avoiding dams and portages, and handed me trail mix and fruit snacks.  Returning home, Mom and Dad and I drove two cars to drop off Dad’s faithful Suburban at the garage to repair the tubes, and we continued on in Mom’s trusty Legacy to the grocery store for the weekly shopping.  I felt happy as we arrived at Smith’s, but left the store an anxiety-ridden wreck.  I lost Dad in the store—he was not sitting at the deli where I usually find him when I have finished shopping.  I found him with Mom funneling into Luana’s check-out line—she is their favorite checker, and she always orders me to “take good care of them.”  “I’ll do my best,” I always promise.  Dad began trembling behind his cart—“I’m not going to make it, Rog,” he said.  “I need to sit down—now.”  Luana sent a bagger running for a chair he could not find, while another bagger drove up with a motorized cart onto which Dad collapsed.  “Nelson,” Luana chided (partly on my behalf, since she could get away with it), “the next time you come, you either will use this motorized cart, or you will not come at all!”  Dad nodded and smiled sheepishly, relieved just to be sitting.  He took to the cart naturally, motoring easily to the car.  Unloading the week’s groceries, Burt Brothers called to say Dad’s car was already fixed.  With Dad sitting in his recliner eating his onion and Swiss on multi-grain bread, Mom and I raced off to retrieve the faithful Suburban, good as new, and for a fair price, before the store closed at 5:00.  Mom crowed that she and I were the heroes of the day for retrieving the repaired Suburban.  We celebrated with pizza, salad, and Paul Hollywood’s beautiful fig and date bread.

Courage at Twilight: Mobility Strategy

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I sat down with Mom and Dad recently, and asked Dad if we could discuss a plan to preserve his mobility for as long as possible. Far from defensive, he seemed grateful for the discussion: he and Mom know that him losing his mobility will dramatically affect quality of life for them both.  After our discussion, I typed and printed our Mobility Strategy, in big blaring pitch, and stuck it to the refrigerator with a magnet.  A day in the hospital, the Christmas and New Year holidays, and family celebrations interrupted some elements of the new routine, like going to the gym.  Other elements we started immediately.  I do not badger Dad about drinking water, for example, but every time I pass his chair, I hand him a bottle of cold water.  My message is clear.  And, to be fair, I hold my own water bottle even as I hand him his.  (Water intake can reduce edema.)  Here is our Mobility Strategy.  I will let you know how it goes.

  1. Stationary Bike. Ride the bike 6 days a week, for 30 minutes each ride.
  2. Gym. Go to the gym 2 days a week, weather permitting.
  3. Leg Compressors. Use the pumping leg compressors when reading at night.
  4. Walker. Use the blue walker between family room, kitchen, and dining room, as needed.
  5. Cane. Keep the “walking stick” handy for short treks in the house or to the car.
  6. Compression Socks. Order.  Wear.
  7. Elevate. When sitting, keep legs elevated.
  8. WATER. Keep several water bottles cold in the fridge.  Sip all day.

(Image by Willfried Wende from Pixabay)

Courage at Twilight: Pantene 2-in-1

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Dad lamented that his scalp hurt, and asked Mom and me to find a better shampoo that would be soothing to his head.  Back in the day, when I had hair, I liked Pantene 2-in-1 shampoo and conditioner.  It softened and smoothed my hair and skin.  So, Mom and I brought home a bottle from the grocery store for Dad to try.  Within a few days, he beamed at how much he liked the new shampoo, remarking that his scalp no longer burned or stung.  (I suspect any shampoo-conditioner combo would have worked.)  The following week, at the grocery store, Mom told me to put five bottles in the shopping cart.  Only two sat on the shelf.  But now we know what works, and will add it routinely to the shopping list.

Courage at Twilight: Grocery Shopping, A Sequel

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I feel so anxious in the grocery store with Mom and Dad.  In the produce section, I assess the fruits and vegetables with one eye even as I monitor Dad’s quickly waning strength with the other, tense and ready to catch him if he slumps.  While Dad waits exhausted and uncomfortable at a deli table, I rush from aisle to aisle scratching items off the shopping list.  I cannot suggest he stay home, and should not.  This is his life, and he enjoys grocery shopping.  If he wants to come with me, he should come.  It is healthy for him to get out of the house, to see the abundant beautiful produce, to get excited about beer-battered cod and grilled bratwurst and baking salmon on Sunday.  But he pays a steep price over and above the grocery bill.  “I’m done, Rog,” he whispered as we stood in the check-out lane.  “I hope I can make it to the car.”  Back at home, I carry eight plastic shopping bags in each hand, thanks to the handles Connor made on his 3D printer.  Mom and I put the groceries away, and stuff the plastic grocery sacks into a larger bag to be recycled.  Wiped out and grateful, they sink into their recliners with their books and newspapers—or the TV remote—and their snacks and drinks.  This is a perfect time for me again to urge Dad, captive to fatigue and comfort, to hydrate.

 

(Grocery bag carriers printed by my son-in-law, Connor.)

Courage at Twilight: Railings and Stairs

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My siblings and I had begun to notice how ascending the stairs had grown more difficult for Mom and Dad.  They huffed and wheezed and groaned.  A wear pattern emerged on the wall where hands had sought some added traction and stability.  My sister Sarah arranged for a company to install a railing on the wall side of the stairs, at equal height with the wood banister.  Now it is much easier for them to push and pull their way up, using all four limbs, and to lean forward as they descend, easing the arthritis pains in their knees.  I will not lie: I use the railing, too.